This is the full text index of the Poland Foundation provider directory.
It is provided for accessibility and search indexing. To search by state, specialty, or name, use the
interactive directory.
Inclusion does not constitute endorsement. Verify credentials and insurance independently.
PA Specialists
Children's Health (Dallas) — Poland anomaly Multidisciplinary Team, UT Southwestern Physicians, 10,000+ plastic surgery visits/year
Children's Health / UT Southwestern
Specialty: Poland anomaly — Full Multidisciplinary Team Approach
Explicitly names Poland anomaly and describes a full multidisciplinary team approach including: pediatric plastic surgeons experienced in treating PS, pediatric cardiothoracic surgeons for inadequate ribcage cases, congenital hand surgeons, hand therapists, and clinical psychologists. Performs the most pediatric plastic and cleft surgery procedures in the region. Discusses timing of treatment through adolescence and long-term implant considerations.
PA Verified
Dr. Andre Panossian, MD, Board-Certified Plastic & Reconstructive Surgeon
Muscle/tissue transfer, fat grafting, implant placement for PS. Background in craniofacial surgery from USC. Focuses on restoring both form and function.
PA Verified
Dr. David Azouz, MD, Board-Certified Plastic Surgeon
Pioneer in DIEP flap and perforator flap breast reconstruction. Uses muscle-sparing natural tissue techniques to correct congenital breast defects including PS. Over 1,700 successful reconstruction procedures. Multiple locations.
PA Verified
Dr. Karen Horton, MD, Board-Certified Plastic Surgeon
Specializes in DIEP flap, SIEA flap, TUG free flap for PS. Muscle-sparing microsurgical options. Both male and female PS correction. Comprehensive consultation process. Female surgeon — understands body image impact.
PA Verified
Dr. Leo Lapuerta, MD, Triple Board-Certified Plastic Surgeon
Look Younger / Plastic Surgery Institute of Southeast Texas
30+ years in plastic surgery including PS. Custom implant placement, fat transfer (lipofilling). Personalized treatment plans based on severity assessment.
PA Verified
Dr. Mossi Salibian, MD, Board-Certified Plastic & Reconstructive Surgeon
Creates custom-made silicone implants using in-office moulage (cast/mold) process. Extensive before/after gallery for PS patients (men and women). Sees patients from across the US and internationally.
PA Verified
Dr. Tomer Avraham, MD, Board-Certified Plastic Surgeon
Avraham Plastic Surgery
Specialty: Poland anomaly Breast & Chest Reconstruction
Fat grafting, implant-based reconstruction, and flap techniques for PS. Addresses both structural and cosmetic correction. Individualized treatment plans for both men and women.
Specialized chest wall malformations clinic explicitly listing Poland anomaly. Orthopedic chest wall specialists, radiology, orthotics, social work under one roof. Also has hand specialists (Dr. Krister Freese and Dr. Jenna Godfrey for brachial plexus/hand).
No-cost carePA Verified
WakeMed Chest Wall Deformity Center, Pediatric Surgery Center of Excellence
PIONEERING: Custom 3D-printed titanium rib implants for severe PS with rib defects. FDA Custom Device Exemption. Collaborates with 3D Systems (Colorado) and Zimmer/Biomet (Florida) for patient-specific implant design. Also treats with muscle flaps and traditional reconstruction. Busiest chest wall center in the Carolinas. PICU with 24/7 parents-stay policy. Treats both children and adults.
PA Verified
Pectus and Chest Wall Treatment Program — Boston Children's Hospital, Academic medical center, ranked among nation's top children's hospitals
Boston Children's Hospital
Specialty: Pediatric chest wall deformity — surgical and nonsurgical
One of the busiest chest wall programs in the country, explicitly listing Poland anomaly among conditions treated. Offers Nuss procedure, vacuum bell therapy, bracing, cryoablation for pain management, and white-light 3D scanning. Treats children and young adults with all levels of chest wall deformity.
PA Verified
Chest Wall Deformity Program — Johns Hopkins All Children's Hospital, Johns Hopkins academic medical center, pediatric surgery fellowship program
Johns Hopkins All Children's Hospital
Specialty: Pediatric chest wall deformity surgery including complex and rare anomalies
Indiana's only multidisciplinary chest wall program, explicitly naming Poland anomaly and chest wall reconstruction after cancer or trauma among conditions treated. Board-certified pediatric general and thoracic surgeons offer Nuss procedure, Ravitch procedure, bracing, epidural and cryoablation pain management. Telemedicine follow-up available.
TelemedicinePA Verified
Chest Wall Deformities Program — UCSF Benioff Children's Hospitals, University of California academic medical center, Division of Pediatric Surgery
UCSF Benioff Children's Hospitals (San Francisco and Oakland)
Program page explicitly names Poland anomaly (spectrum of chest-wall abnormalities including absent pectoralis major) alongside pectus excavatum, pectus carinatum, Jeune syndrome, and primary rib anomalies. Faculty spans both the San Francisco and Oakland Benioff campuses; offers Nuss and modified Ravitch procedures.
PA Verified
Chest Wall Program — Stanford Medicine Children's Health, Lucile Packard Children's Hospital Stanford; academic medical center
Lucile Packard Children's Hospital Stanford
Specialty: Pediatric and young adult chest wall deformity — surgical and nonsurgical
Dedicated Chest Wall Program at Stanford explicitly lists Poland anomaly on its Conditions We Treat page alongside pectus excavatum, pectus carinatum, mixed deformity, slipping rib syndrome, sternal cleft, and thoracic dystrophy. Treats children, adolescents, and adults. Offers surgical and nonsurgical options.
PA Verified
Pediatric and Adolescent Breast and Chest Program — Children's Hospital of Philadelphia, Major academic children's hospital; Division of Plastic, Reconstructive and Oral Surgery
Children's Hospital of Philadelphia (CHOP)
Specialty: Pediatric and adolescent breast and chest wall disorders including congenital reconstruction
Program page explicitly names Poland anomaly (missing chest wall muscle and breast tissue) as a congenital anomaly treated. Services include chest wall reconstruction using tissue expanders and implants, muscle/skin/bone flaps, and mastopexy. Published patient story documents Poland anomaly surgical reconstruction at CHOP.
PA Verified
Chest Wall Clinic — Nationwide Children's Hospital, Major academic children's hospital affiliated with Ohio State University; 30+ years chest wall experience
Nationwide Children's Hospital
Specialty: Pediatric and adult chest wall deformity — surgical and nonsurgical
Dedicated Chest Wall Clinic with 30+ years of experience treating pectus excavatum, pectus carinatum, rib deformities, and chest wall tumors. One of the first centers to use intercostal nerve cryotherapy for postoperative pain. Accepts patients through age 35 and offers telemedicine follow-up. Multidisciplinary team includes surgery, cardiology, and pulmonary.
Telemedicine
Chest Wall Center — Cincinnati Children's, Major academic children's hospital; nationally ranked by U.S. News
Cincinnati Children's Hospital Medical Center
Specialty: Pediatric and young adult chest wall deformity — surgical and nonsurgical
Multidisciplinary Chest Wall Center drawing on plastic surgery, pediatric surgery, radiology, cardiology, pulmonary, pain management, and orthopedics. Provides Nuss procedure, vacuum bell therapy, and pectus bracing; offers online second opinions. Accepts adult patients up to age 35. Includes a behavioral medicine psychologist.
Telemedicine
Chest Wall Disorders Program — Ann & Robert H. Lurie Children's Hospital, Academic children's hospital affiliated with Northwestern University Feinberg School of Medicine
Ann & Robert H. Lurie Children's Hospital of Chicago
Specialty: Pediatric chest wall deformity — surgical and nonsurgical
Dedicated Chest Wall Disorders Program (Pectus Clinic) treating pectus excavatum and pectus carinatum with Nuss procedure, vacuum bell therapy, and white-light 3D scanning. Multidisciplinary team includes pediatric surgeons, cardiology, pulmonary, orthotics, and physical therapy. Multiple outpatient locations across Illinois; active clinical research program.
Pectus Program — Texas Children's Hospital, Major pediatric academic medical center affiliated with Baylor College of Medicine
Texas Children's Hospital
Specialty: Pediatric chest wall deformity — surgical and nonsurgical
Comprehensive Pectus Program specializing in chest wall abnormalities including pectus excavatum and pectus carinatum, with surgical and non-surgical treatment options. Internal publications document experience with Poland anomaly in the context of pectus-related chest wall deformities. Telemedicine offered for consultations.
Telemedicine
Pediatric Hand Surgery
Boston Children's Hospital — Hand and Orthopedic Upper Extremity Program, Harvard Medical School affiliate, CoULD Registry founding center
Boston Children's Hospital
Specialty: Congenital Hand and Upper Limb Differences — 6,600+ patients and 1,500+ surgeries/year
Founded the CoULD Registry — the first multi-center registry measuring outcomes for congenital upper limb differences. First and one of only programs in US combining hand and upper limb expertise. All surgeons hold dual fellowships in pediatric orthopedics and hand surgery. Includes a psychologist for emotional issues and social workers for family support. Wrote the landmark textbook 'Pediatric and Upper Limb Surgery.' Study of ~600 CoULD patients found children with congenital hand differences had decreased upper limb function but BETTER peer relationships and emotional wellbeing vs general population.
PA Verified
Boston Children's Hospital — Hand and Upper Extremity Programs, Two Nationally Ranked Programs (Orthopedics + Plastic Surgery)
Hand and Orthopedic Upper Extremity Program + Hand and Reconstructive Microsurgery Program
Specialty: Symbrachydactyly, Syndactyly, Congenital Hand Differences
Explicitly identifies Poland anomaly connection to symbrachydactyly. Nationally known as preeminent center for congenital musculoskeletal conditions. Treated thousands of children with symbrachydactyly. Offers toe-to-hand transfer, syndactyly release, bone transfer, and advanced microsurgery. World-class clinical research.
PA Verified
CHLA Division of Plastic and Maxillofacial Surgery — Hand and Microsurgery Program, Division of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles
Children's Hospital Los Angeles
Specialty: Pediatric Congenital Hand Differences, Microsurgical Upper Extremity Reconstruction
Comprehensive program providing state-of-the-art microsurgical care for children with congenital, acquired, and traumatic hand and upper extremity deformities. Treatment includes soft tissue, bone, vascular, and peripheral nerve reconstruction using advanced microsurgical techniques. Integrated occupational therapy team for functional evaluation and post-surgical rehabilitation. Families from across the country and internationally seek care here. Also treats broader congenital chest/trunk conditions including Poland anomaly-related presentations.
CHLA Pediatric Upper Extremity and Hand Specialist Program, Jackie and Gene Autry Orthopedic Center, Children's Hospital Los Angeles
Children's Hospital Los Angeles
Specialty: Congenital Hand Disorders, Pediatric Upper Extremity Surgery
Treats congenital hand disorders from infancy, including brachydactyly, syndactyly, and hypoplastic hand presentations common in Poland anomaly. High patient volume gives surgeons deep expertise in pediatric congenital hand conditions. Offers advanced microvascular procedures and nerve transfer surgery. Frequently helps families told a problem is too complex to treat elsewhere.
Children's Health (Dallas) — Hand & Peripheral Nerve Surgery, UT Southwestern Physicians
Specialty: Congenital Hand Differences, Symbrachydactyly, Syndactyly
17+ years combined experience. Leading research including electrical nerve interfaces for prosthetics. Treats syndactyly, symbrachydactyly, free toe transfer, pollicization, brachial plexus. Same-day appointments for trauma.
Cincinnati Children's Hospital — Pediatric Hand and Upper Extremity Fellowship, Cincinnati Children's Hospital Medical Center, Dr. Roger Cornwall directs fellowship
Cincinnati Children's Hospital Medical Center
Specialty: Congenital Hand Differences, Brachial Plexus, Pediatric Hand Trauma
Dr. Roger Cornwall is Professor of Orthopedic Surgery, full-time pediatric hand/upper limb surgeon since 2004, and founded the Pediatric Hand and Upper Extremity Surgery Fellowship. Research lab investigates molecular basis of neuromuscular contracture development. Several top surgeons nationally (including Dr. Trehan at HSS) completed fellowship training here. Strong research program on patient-reported outcomes for congenital hand differences.
Dr. Aaron Daluiski, MD, Board-Certified Orthopedic Surgeon
Hospital for Special Surgery (HSS)
Specialty: Hand & Upper Extremity, Pediatric and Adult — Symbrachydactyly
Explicitly lists symbrachydactyly and its Poland anomaly association on his practice page. HSS Center for Congenital Hand and Arm Disorders is a leading national program.
PA Verified
Dr. Apurva S. Shah, MD, MBA, Pediatric Orthopedic Hand Surgeon
Children's Hospital of Philadelphia (CHOP) — Hand and Arm Disorders Program
Specialty: Congenital Hand Differences / Symbrachydactyly
Published Poland anomaly patient story on CHOP website (Beau's story). Specializes in pediatric hand and upper extremity surgery with extensive training in congenital hand differences. CHOP's Hand and Arm Disorders Program is the region's largest, performing 1,000+ procedures per year.
PA Verified
Dr. Warren C. Hammert, MD, Hand and Upper Extremity Surgeon, Duke Orthopaedics
Duke Orthopaedics Arringdon / Duke Sports Science Institute
Specialty: Pediatric Congenital Hand Conditions, Syndactyly, Symbrachydactyly
One of the only providers in North Carolina specializing in congenital hand conditions in children. Treats syndactyly, symbrachydactyly, and other hand differences present at birth — all conditions commonly seen in Poland anomaly. Sees patients from infants to seniors. Coordinates care with other specialists when children have associated conditions. Emphasizes addressing most conditions before school age for best functional outcomes, but welcomes patients at any age.
Duke Health — Congenital Hand Conditions Program, National Pediatric Orthopedics Program
Specialty: Polydactyly, Syndactyly, Symbrachydactyly, Congenital Hand Conditions
Location: Durham, NC
Contact: Dr. Warren C. Hammert (Hand and Upper Extremity Surgeon)
Full multidisciplinary team: pediatric orthopedic surgeons, plastic surgeons, therapists. Nationally ranked. Monitors conditions through growth and development.
Gillette Children's Specialty Healthcare — Hand and Upper Extremity, CoULD Registry member, 125+ year specialty hospital, University of Minnesota teaching hospital
Gillette Children's
Specialty: Congenital Hand Differences, Limb Differences, Complex Pediatric Orthopedics
Location: St. Paul (also Burnsville, Maple Grove, + regional sites across Minnesota), MN
CoULD Registry member. Drs. Ann Van Heest and Deborah Bohn are internationally recognized hand surgeons — co-authored 'Proud to be Me' book for children with physical differences. Hosted 2023 World Symposium on Congenital Malformations of the Hand and Upper Limb. One of nation's largest concentrations of pediatric orthopedic surgeons. Founded 1897 as first US hospital exclusively for children with physical disabilities. Treats 27,900+ patients/year from 43 states and 8 countries. On-site prosthetics/orthotics fabrication. Integrated care model — families see all providers same day.
PA Verified
HSS Lerner Children's Pavilion — Center for Congenital Hand and Arm Disorders, Hospital for Special Surgery (#1 orthopedics nationally by US News), NewYork-Presbyterian affiliate
Hospital for Special Surgery / Shriners Children's Philadelphia
Specialty: Congenital Hand and Arm Differences, Pediatric Upper Limb and Peripheral Nerve Surgery
Location: New York (also Philadelphia, Greenville SC), NY, PA, SC
Contact: Dr. Dan Zlotolow (also Shriners Philadelphia/Greenville — leads only fellowship-trained pediatric hand surgeons in NY/NJ/CT, founder of PHISOS, team leader for first pediatric hand transplant, 150+ international invited lectures); Dr. Samir Trehan (Harvard undergrad, Brown MD, hand fellowships at Wash U + Cincinnati Children's, specialized in congenital upper limb anomalies)
HSS is ranked #1 in orthopedics nationally. Explicitly treats symbrachydactyly (notes it can be associated with absence of chest wall musculature — direct Poland anomaly reference). Dr. Zlotolow is considered a top international expert — treated more children with arthrogryposis and acute flaccid myelitis than any surgeon in the Western Hemisphere. Founded Pediatric Hand International Society of Surgeons (PHISOS). Financial assistance available for families in need. Also see LittleArms.org — educational resource managed by Dr. Zlotolow.
PA Verified
Hand & Upper Extremity Center of Georgia, Fellowship-Trained, Board-Certified Orthopedic Hand Surgeons
The Hand & Upper Extremity Center of Georgia / Children's Healthcare of Atlanta (CHOA)
Specialty: Congenital Hand Surgery — Syndactyly, Symbrachydactyly
Location: Atlanta (multiple locations: Atlanta, Alpharetta, Cumming, Lawrenceville), GA
Contact: Dr. Gary M. Lourie; Dr. Allan E. Peljovich; Dr. Joshua A. Ratner; Dr. Bryce T. Gillespie; Dr. Erika L. Templeton
Southeast's preeminent pediatric hand surgery practice. Only hand surgeons at CHOA-Scottish Rite. 1,000+ pediatric hand/upper extremity surgeries per year — more than any other hand surgery practice in the Southeast. Treats syndactyly, symbrachydactyly, and other congenital hand differences. Surgeons trained at Boston Children's, Shriners Philadelphia. Founded by Dr. Loui Bayne, a pioneer in congenital hand surgery.
Hospital for Special Surgery (HSS) — Center for Congenital Hand and Arm Disorders, #1 Ranked Orthopedic Hospital in the US
Specialty: Congenital Hand and Arm Differences
Location: New York City, NY
Contact: Dr. Aaron Daluiski; Dr. Samir K. Trehan; Dr. Dan A. Zlotolow
Treats syndactyly, symbrachydactyly, constriction bands, hypoplastic thumb, clinodactyly, and other congenital differences. Works in close collaboration with hand therapists, pediatricians, radiologists.
Le Bonheur Children's Hospital — Hand and Upper Extremity Program, Campbell Clinic Orthopedics (nation's oldest and largest orthopedic group), University of Tennessee Health Science Center
Le Bonheur Children's Hospital / Campbell Clinic
Specialty: Congenital Hand and Upper Extremity Deformities, Pediatric Orthopedics
Location: Memphis (also outpatient centers in Jackson TN, Tupelo MS, Jonesboro AR), TN, MS, AR
CLOSEST major children's hospital to Jackson, Mississippi (~3 hour drive). Campbell Clinic surgeons are board-certified and fellowship-trained. Le Bonheur has OUTPATIENT CENTERS in Jackson TN and Tupelo MS — reducing travel burden for Mississippi families. Dr. Stephanie Chen trained at BOTH Nationwide Children's (CoULD Registry member) and Gillette Children's (another CoULD member). Multidisciplinary team includes OT/PT/speech therapy, orthotists, social workers. 15 operating rooms with advanced imaging. Regional hub for the Mid-South.
Mayo Clinic — Congenital Hand Anomalies, Mayo Clinic
Specialty: Multidisciplinary Management of Congenital Hand Anomalies
Multidisciplinary coordination for congenital hand anomalies. Emphasizes early referral for optimal outcomes. Coordinates diagnosis, treatment, and emotional support.
Telemedicine
NYU Langone / Hassenfeld Children's Hospital — Congenital Hand Deformities, NYU Langone Health
Specialty: Surgery for Congenital Hand Deformities, Symbrachydactyly
Syndactyly release, phalangeal transfer, toe-to-hand transfer, bone lengthening. Also fits prosthetics through NYU Rusk Rehabilitation. Comprehensive pediatric follow-up.
Nationwide Children's Hospital — Hand and Upper Extremity Program, U.S. News Ranked for Orthopedics
Nationwide Children's Hospital
Specialty: Congenital Hand Differences, Symbrachydactyly, Limb Differences
Location: Columbus, OH
Contact: Dr. James E. Popp (Director of Hand Service); Dr. Kim Bjorklund; Dr. Stephanie A. Russo
Three specially trained pediatric hand surgeons. Participates in national limb differences registry. Addresses hand/arm function AND appearance AND psychological confidence. Integrates psychology, genetics, and physical medicine into care plans.
Nationwide Children's Hospital — Hand and Upper Extremity Program + Limb Difference Clinic, CoULD Registry member, U.S. News ranked for Orthopedics
Nationwide Children's Hospital
Specialty: Congenital Hand Differences, Limb Differences, Adaptive Sports Medicine
CoULD Registry member. Three specially trained pediatric hand surgeons. Separate Limb Difference Clinic focused exclusively on congenital and acquired limb differences (not part of larger general practice). Includes Adaptive Sports Medicine Program for athletes with limb differences. Psychology services integrated into care. Dr. Stephanie Russo specializes in congenital hand/upper limb differences and arthrogryposis. Plastic and Reconstructive Surgery department treats hand abnormalities and breast deformities. Research in quality of life among children with limb differences.
TelemedicinePA Verified
Phoenix Children's — Hand Surgery and Congenital Hand Program, Phoenix Children's Hospital
Phoenix Children's Hospital
Specialty: Congenital Hand Differences including Symbrachydactyly, Syndactyly, Polydactyly
Dedicated congenital hand program treating symbrachydactyly (explicitly listed), syndactyly, polydactyly, amniotic band syndrome, arthrogryposis, radial/ulnar club hand, macrodactyly, trigger thumb, limb defects and longitudinal deficiencies. Team of experts treats all problems of hands and forearm including congenital differences. Explicitly lists symbrachydactyly in conditions — directly relevant to Poland anomaly hand presentation.
Scottish Rite for Children — Charles E. Seay, Jr. Hand Center, #1 Ranked Pediatric Orthopedics in the US (U.S. News & World Report)
Scottish Rite for Children
Specialty: Congenital Hand Differences, Limb Differences
World-renowned. The Charles E. Seay Jr. Hand Center provides specialized care for children born with hand deformities. Research focuses on causes of limb differences and genetic growth abnormalities. 193 patents generated. Treats regardless of ability to pay. Also has Centers for Excellence in Limb Lengthening.
No-cost care
Seattle Children's Hospital — Hand and Upper Extremity Program, CoULD Registry member, NORD Rare Disease Center of Excellence (Genetics), U.S. News ranked
Seattle Children's Hospital
Specialty: Congenital Hand and Upper Limb Differences, Symbrachydactyly, Syndactyly
Location: Seattle (also Bellevue, Everett, Federal Way, Tri-Cities, Wenatchee), WA
CoULD Registry member. Seattle Children's is the only children's hospital in the Pacific Northwest named a NORD Rare Disease Center of Excellence. Hand and upper extremity surgeons treat the full spectrum of congenital hand differences including symbrachydactyly and syndactyly — the primary Poland anomaly hand presentations. Comprehensive team spanning orthopedics, plastic surgery, genetics, and OT under one roof. Multiple satellite locations across Washington State extend reach to rural families. Genetics clinic frequently involved in evaluation of congenital anomaly cases including Poland anomaly.
TelemedicinePA Verified
Shriners Children's Northern California / UCSF — Congenital Hand Program, CoULD Registry member (Shriners Sacramento + UCSF Benioff Oakland partnership), no-cost care at Shriners
CoULD Registry member. Joint program between Shriners Northern California and UCSF Benioff Oakland. Dr. Manske (Shriners) and the UCSF team together organize Camp Winning Hands — the only free summer camp specifically for children with limb differences west of the Rocky Mountains. UCSF Benioff Oakland's Pediatric Hand and Reconstructive Surgery Center is one of the Bay Area's busiest programs with 13,000+ patient visits/year. Integrative approach combining pediatric orthopedics, hand surgery, plastic surgery, and microsurgery. No-cost care available at Shriners location for qualifying families.
No-cost carePA Verified
Texas Children's Hospital — Hand and Upper Extremity Program, Baylor College of Medicine, Largest Children's Hospital in the US
Texas Children's Hospital
Specialty: Congenital Hand and Upper Limb Differences, Reconstructive Microsurgery, Limb Deformity
Location: Houston (West Campus near Katy, also Bellaire, Cy-Fair, North Austin), TX
Multidisciplinary team of fellowship-trained hand and microvascular surgeons from both orthopedics and plastic surgery. Preserves and restores function in upper extremities for children born with limb differences or those affected by injury/disease. Performs reconstructive microsurgery to repair blood vessels and nerves. Also has separate Limb Deformity and Extremity Preservation Program using 3D computer-guided correction, vascularized bone grafting. Integrated OT/PT post-surgical rehabilitation. Located in world's largest children's hospital.
Vanderbilt Children's — Medical Genetics and Genomic Medicine, Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
9 medical genetics physicians, 10 genetic counselors, 6 advanced practice providers. Evaluates congenital anomalies including birth defects. Provides testing, counseling, management options. 24-hour emergent inpatient consultations available. Prenatal genetic counseling through Vanderbilt Center for Women's Health. Works with Fetal Center at Vanderbilt for prenatal diagnosis. ~5 hour drive from Jackson, MS.
Vanderbilt Children's — Pediatric Hand and Upper Extremity Program, Monroe Carell Jr. Children's Hospital, U.S. News ranked for Orthopedics
Monroe Carell Jr. Children's Hospital at Vanderbilt
Specialty: Congenital Hand and Upper Extremity Differences, Reconstructive Microsurgery
Location: Nashville (also Murfreesboro), TN
Contact: Dr. Brinkley Sandvall (fellowship-trained pediatric hand and microvascular surgery, Royal Children's Hospital Melbourne)
Multidisciplinary team from neurosurgery, orthopedics, plastic surgery, trauma, physical medicine/rehabilitation, and OT. Dr. Sandvall completed dual fellowships in hand surgery (Washington University St. Louis) and pediatric hand/microvascular surgery (Royal Children's Hospital, Melbourne). Sees families prenatally when congenital differences detected on ultrasound. Treats congenital differences, burns, tumors, neuromuscular disorders, vascular anomalies. Also participates in multidisciplinary brachial plexus, vascular anomalies, and spasticity clinics. ~5 hour drive from Jackson, MS.
Telemedicine
Washington University / Shriners Children's St. Louis — Congenital Hand Program, CoULD Registry member, Shriners Children's (no-cost care), Washington University School of Medicine
Shriners Children's St. Louis / Washington University School of Medicine
Specialty: Congenital Hand and Upper Limb Differences
CoULD Registry member. Located on the Washington University School of Medicine campus — one of the nation's top academic medical institutions. Joint program combining Shriners' no-cost care model with WashU's academic surgical expertise. Treats full spectrum of congenital upper limb differences. Notably, Poland Foundation's planned annual conference is in St. Louis, making this a natural local partner institution for the organization. Shriners St. Louis has orthopedics, limb reconstruction, and plastic surgery capabilities.
No-cost carePA Verified
Shriners Network
Dr. Douglas Barnes, MD, Board-Certified Orthopedic Surgeon, 50+ years experience
Chief of staff at Shriners Houston. Over 50 years in pediatric orthopedics. Residency at A.I. DuPont Institute (now Nemours). Treats pediatric orthopedic conditions including limb deficiencies and congenital anomalies. Published researcher in cerebral palsy outcomes, arthrogryposis, and gait analysis. Fluent in English and Spanish.
No-cost careTelemedicine
Dr. Gloria Gogola, MD, Board-Certified Orthopedic Surgeon, Fellowship-Trained Hand Surgery
UT Physicians / McGovern Medical School at UTHealth Houston (formerly Chief of Hand & Upper Limb Surgery at Shriners Children's Houston)
Specialty: Pediatric Hand and Upper Limb Surgery — Congenital Hand Differences
Board-certified, fellowship-trained orthopedic surgeon specializing in pediatric hand and upper limb surgery. Clinical expertise in congenital hand differences, upper limb deformity and growth arrest, limb length discrepancy, cerebral palsy, arthrogryposis, and syndromic conditions. Former chief of hand and upper limb surgery at Shriners Houston. Associate professor at McGovern Medical School. Published researcher on pediatric dexterity, hand function evaluation, and upper limb motion analysis. Member of ASSH, AACPDM, and Orthopedic Research Society.
PA Verified
Shriners Children's Boston
Specialty: Orthopedics, Burns, Reconstructive Surgery
Arkansas's only dedicated pediatric hand clinic. The orthopedic team treats the full spectrum of trauma, congenital, and acquired deformities of the hand and upper extremities including complete reconstruction, soft-tissue defects, and burn contractures. The Orthopedic Limb Reconstruction Clinic treats congenital and acquired bone conditions. Offers prenatal orthopaedic consultations when a condition is diagnosed in utero. UAMS also has a separate fellowship-trained adult hand and upper extremity surgery program for older patients. Northwest Arkansas campus (Springdale) and Jonesboro outreach clinic extend statewide reach.
Children's Mercy Kansas City — Hand Surgery & Plastic and Reconstructive Surgery, Children's Mercy Kansas City; U.S. News & World Report ranked in 9 of 11 pediatric specialties; ACS Level 1 Children's Surgery Center (one of only ~53 in the nation); the only pediatric Level I Trauma Center between Denver and St. Louis
Children's Mercy Kansas City
Specialty: Pediatric Hand Surgery — Congenital Hand Differences; Pediatric Plastic & Reconstructive Surgery (one of the largest programs in the US)
Location: Kansas City, MO (also Overland Park, KS; Northland; Wichita, KS), KS
Contact: Dr. Christine J. Cheng, MD, MPH — Section Chief, Hand Surgery; fellowship-trained at Washington University/Barnes Hospital (hand & microvascular surgery); Clinical Assistant Professor at both University of Missouri-Kansas City and University of Kansas Schools of Medicine. Specialties explicitly include congenital hand deformities and upper extremity reconstruction.
One of the most comprehensive pediatric programs in the central United States, with a dedicated pediatric Hand Surgery team and one of the largest pediatric plastic surgery programs in the nation. Directly relevant to Poland anomaly: the Hand Surgery team explicitly treats congenital hand deformities and upper extremity differences in children. Plastic Surgery offers prenatal consultations when congenital anomalies are detected by ultrasound — a key touchpoint for Poland families. Integrated occupational therapists provide post-surgical rehab for congenital hand differences. The craniofacial/plastic surgery program treats more cleft patients per year than any other program in a six-state region (MO, KS, IA, NE, OK, AR) — demonstrating the breadth of the program's regional reach. Has a dedicated Kansas location in Overland Park, serving the full KC metro on both sides of the state line. For PS chest and breast asymmetry, the plastic surgery team provides comprehensive reconstructive care. Social workers provide family support.
Children's Nebraska — Plastic & Reconstructive Surgery (Omaha), Nebraska's only freestanding children's hospital
Children's Nebraska (Children's Hospital & Medical Center)
Specialty: Pediatric Plastic Surgery including Syndactyly and Polydactyly; Pediatric Orthopaedics
Nebraska's only freestanding children's hospital. Plastic & Reconstructive Surgery explicitly treats polydactyly (extra fingers/toes) and syndactyly (fused fingers/toes) — Poland anomaly's primary hand presentations. Carolyn Scott Rainbow House on site provides 56-room overnight guest housing for families traveling more than 90 miles — directly addressing the rural family travel barrier. Full surgical capabilities for congenital conditions from infancy.
Telemedicine
Children's Wisconsin — Hand and Upper Extremity Program, Children's Wisconsin (Milwaukee); Wisconsin's highest-rated pediatric surgery center
The ONLY comprehensive pediatric hand and upper extremity program in the state of Wisconsin. Treats the full spectrum of congenital hand and arm differences including syndactyly — the same presentation seen in Poland anomaly. Certified pediatric hand therapists are integrated members of the team, providing post-surgical rehab to maximize functional outcomes. Surgeons are 100% focused on pediatric patients. Particularly relevant for Poland anomaly families in the upper Midwest who might otherwise need to travel to Chicago, Minneapolis, or Columbus. Serves families from across Wisconsin, the Upper Peninsula of Michigan, and northern Illinois.
Children's of Mississippi — Medical Genetics Division, UMMC Academic Medical Center — State's Only Children's Hospital
University of Mississippi Medical Center / Children's of Mississippi
Three board-certified geneticists, two nurse practitioners, four board-certified genetic counselors, and two metabolic dietitians. Serves adult, pediatric, and prenatal populations across Mississippi. Evaluates congenital anomalies including birth defects, chromosomal disorders, genetic syndromes. Often the threshold referral for families after initial diagnosis of conditions like Poland anomaly. Coordinates with other specialists for comprehensive workup. Available at multiple satellite clinics statewide.
Children's of Mississippi — Pediatric Orthopaedics, UMMC Academic Medical Center
University of Mississippi Medical Center / Children's of Mississippi
Pediatric orthopedic specialists within the state's only children's hospital. Treats congenital musculoskeletal conditions, limb differences, and developmental orthopedic issues. Part of a 250-bed, seven-floor facility with the state's only Level I pediatric trauma center. Collaborates with the Jabaley-Songcharoen Hand Center for congenital hand conditions.
Telemedicine
Dr. Erin Ransom — Children's of Alabama / UAB, MD, Assistant Professor of Orthopedic Surgery, UAB; Fellowship: Pediatric Hand Surgery at Children's Healthcare of Atlanta (CoULD Registry member); Hand Surgery Fellowship at UAB
Children's of Alabama / University of Alabama at Birmingham Department of Orthopedic Surgery
Specialty: Pediatric Congenital Hand Surgery, Brachial Plexus, Peripheral Nerve
Alabama's dedicated pediatric congenital hand surgeon. Trained at Children's Healthcare of Atlanta — one of the CoULD Registry's core member centers. Clinical focus: congenital conditions of the hand and upper extremity, pediatric hand trauma, cerebral palsy, brachial plexus and peripheral nerve injuries. Participates in Children's of Alabama's multidisciplinary brachial plexus clinic. Serves as the pediatric hand surgery attending for UAB's ACGME-accredited Hand Surgery Fellowship — fellows train under her for all congenital conditions and pediatric trauma. Children's of Alabama is the Level 1 pediatric trauma center for the state and draws from neighboring states including Mississippi. Approximately 3.5 hours from Jackson, MS.
Emory University Department of Human Genetics — Pediatric Genetics Clinic, Emory University School of Medicine, partnered with Children's Healthcare of Atlanta. Director: Michael J. Gambello, MD, PhD
Full-spectrum pediatric genetic evaluation and counseling clinic. Relevant for Poland anomaly families seeking genetic consultation to rule out associated syndromes (Moebius, Klippel-Feil, dextrocardia) or confirm sporadic nature of condition. Published research on congenital limb deficiency disorders includes Dr. William Wilcox of Emory's Human Genetics department. Partners with CHOA for integrated pediatric care. Recognized by NORD as a Center of Excellence for rare disease diagnosis.
Hand Center of Louisiana — Pediatric Hand Specialists, 40+ year legacy practice, Hand Surgical Associates
Hand Center of Louisiana / Hand Surgical Associates
Specialty: Pediatric Hand Surgery, Congenital Conditions, Comprehensive Hand Care
Location: Metairie (New Orleans metro), LA
Contact: Dr. Eric R. George, MD; Dr. Thomas R. Lyons, MD
40+ year legacy private practice specializing in all conditions of the hand and upper extremity in children and adults. Dedicated pediatric hand specialist page covering congenital differences and injuries from birth through adolescence. Full integrated center: surgical care, in-house imaging/diagnostics, hand therapy (certified occupational therapists), hand counseling center, and rheumatology/neurological testing — all under one roof. Dr. George has been described by patients as treating children's hands including piano-playing outcomes. Approximately 3 hours from Jackson, MS.
Jabaley-Songcharoen Center for Hand, Upper Extremity and Nerve Surgery, UMMC Academic Medical Center
University of Mississippi Medical Center / Children's of Mississippi
Specialty: Pediatric Congenital Hand Surgery, Upper Extremity, Nerve Surgery
Location: Jackson, MS
Contact: Dr. Marc E. Walker (Harvard Medical School, Yale fellowship in hand and microsurgery)
Mississippi's first multidisciplinary hand center, combining plastic surgery and orthopedic surgery expertise. Treats the full breadth of hand conditions including pediatric congenital hand differences (birth differences, absent/extra digits), complex nerve conditions, microsurgery. Located within Children's of Mississippi — the state's only children's hospital. Runs a dedicated pediatric congenital hand clinic. High-volume, high-acuity center. Established with a $5 million gift. Clinical research fellowship program in hand surgery.
Johns Hopkins Children's Center — Pediatric Plastic & Reconstructive Surgery, Johns Hopkins Medicine; Ranked among top 10 children's hospitals nationally (U.S. News & World Report); birthplace of academic pediatrics in the United States
Johns Hopkins Children's Center
Specialty: Pediatric Plastic & Reconstructive Surgery — Congenital Hand and Limb Anomalies
One of the most storied pediatric programs in the world. The Pediatric Plastic and Reconstructive Surgery division explicitly lists congenital hand and foot anomalies — including syndactyly, polydactyly, amniotic band syndrome, hypoplastic thumb, and cleft hand — as core conditions treated. This directly covers the Poland anomaly hand presentation. For PS chest/breast reconstruction in adolescents, the department provides comprehensive reconstructive care. Multiple Maryland locations including main campus in Baltimore plus outreach to Bethesda, Annapolis, and Columbia, making it accessible across the DC-to-Baltimore corridor.
MU Health Care Children's Hospital — Pediatric Plastic Surgery (Columbia), University of Missouri Health Care — academic medical center; central Missouri referral hub
MU Health Care / University of Missouri Children's Hospital
Specialty: Pediatric Plastic Surgery, Syndactyly, Congenital Hand Anomalies
University of Missouri's academic pediatric plastic surgery program with detailed syndactyly care protocol: prenatal consultation when diagnosed by ultrasound, physical exam and X-ray at birth, staged surgical planning with skin grafts, and long-term growth follow-up. Surgery performed at 18 months (or 6 months when thumb/small finger involved). Website explicitly notes that syndactyly can be associated with Poland anomaly — a rare example of a provider directly naming Poland anomaly on patient-facing web content. Serves central Missouri and surrounding rural region as the primary academic referral center.
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Nemours Children's Hospital Delaware — Hand & Upper Extremity Differences Program, Nemours Children's Health; Nationally ranked #8 in Pediatric Orthopedics (U.S. News & World Report); one of the largest pediatric health systems in the US; Delaware's only Pediatric Level 1 Trauma Center
Nemours Children's Hospital, Delaware
Specialty: Pediatric Hand & Upper Extremity — Congenital Differences; Hand Therapy Program
Location: Wilmington (also satellite locations in NJ, PA, FL), DE
Phone: See website (NemoursLink referral system available)
Age range: Pediatric through young adult (up to 21)
One of the top 10 pediatric orthopedic programs in the nation. Nemours has world-renowned pediatric orthopedic surgeons with special training in hand, upper extremity, and microvascular surgery. They treat the full range of congenital hand and arm differences. An integrated Hand Therapy Program pairs with surgery — certified hand therapists provide one-on-one rehabilitation specifically for pediatric patients. Notably, Nemours serves Delaware, New Jersey, Pennsylvania, and Florida families through satellite locations. Founded as a pediatric orthopedic institute in 1940 through the Alfred I. duPont legacy — orthopedics is literally at the core of the institution's founding mission.
Norton Children's Hospital — Hand Surgery (Louisville), Kentucky's only full-service free-standing pediatric hospital; Louisville's only Level I Pediatric Trauma Center
Norton Children's Hospital / Norton Louisville Arm & Hand
Specialty: Pediatric Congenital Hand Surgery — Symbrachydactyly, Syndactyly, full upper extremity spectrum
Location: Louisville (regional outpatient centers throughout Jefferson County and Southern Indiana), KY
Explicitly lists symbrachydactyly and syndactyly among conditions treated for children and teens. Surgeons with Norton Louisville Arm & Hand cover Level I pediatric trauma and provide congenital hand anomaly surgery for children. Capable of toe-to-hand transfer for thumb reconstruction. 125-year presence in Louisville; draws from Kentucky, Southern Indiana, and surrounding region. One of the largest Level IV NICUs in the country on site.
PA Verified
Ochsner Health — Hand and Upper Extremity Center (Pediatric), Ochsner Health, #1 children's hospital in Louisiana (U.S. News), nationally ranked pediatric orthopedics
Ochsner Health — Hand and Upper Extremity Center
Specialty: Pediatric and Adult Hand Surgery, Congenital Hand Conditions including Webbed Fingers
Location: New Orleans (also Baton Rouge, Houma, Crowley, Lafayette), LA
Contact: Dr. Shoichiro Tanaka, MD, MPH (Plastic, Reconstructive and Hand Surgery)
Ochsner's Hand and Upper Extremity Center explicitly lists congenital hand and wrist problems — including cerebral palsy and webbed hands — among conditions treated for both children and adults. Pediatric orthopedics is a nationally ranked specialty at Ochsner Children's (Top 50 nationally, U.S. News). Has locations across southern Louisiana — New Orleans, Baton Rouge, Houma, Crowley, and Lafayette — reducing travel burden for Gulf South families. Ochsner serves patients from Louisiana AND Mississippi. The Ochsner system explicitly states it serves patients from both states. Approximately 3 hours from Jackson, MS.
Oklahoma Children's Hospital OU Health — Plastic & Reconstructive Surgery / Upper Extremity Orthopedics, Oklahoma Children's Hospital at OU Health; University of Oklahoma Health Sciences Center; Oklahoma's only dedicated children's hospital; Oklahoma's only 24/7 nationally verified Level 1 pediatric trauma center
Oklahoma's ONLY comprehensive team of pediatric plastic and reconstructive surgeons, and the only dedicated children's hospital in the state. Directly relevant to Poland anomaly: the plastic surgery team treats congenital corrections and craniofacial conditions including congenital asymmetry — the same category as PS chest/breast asymmetry. The upper extremity orthopedics program fields the largest group of upper extremity microsurgeons in Oklahoma, specifically trained for the most delicate and precise surgical techniques for hand and arm conditions. Multidisciplinary team includes plastic surgeons, orthopedic surgeons, geneticists, and rehabilitation specialists. Research in congenital anomalies, 3D printing for surgical planning, and augmented reality — cutting-edge capabilities relevant to complex Poland anomaly cases. Serves Oklahoma's 77 counties plus surrounding region.
Primary Children's Hospital — Pediatric Orthopaedics / Hand Surgery (Salt Lake City), Intermountain Health / University of Utah — ranked pediatric hospital; Mountain West regional referral center
Primary Children's Hospital
Specialty: Pediatric Congenital Hand Differences, Upper Extremity Surgery, Limb Differences
The Mountain West's primary referral center for complex pediatric care — the practical destination for families from Wyoming, Montana, Idaho, Nevada, and rural Colorado who need subspecialty hand surgery unavailable in their home state. University of Utah orthopaedic program includes fellowship-trained pediatric hand surgeons. Shriners Children's Salt Lake City is also located here — providing a no-cost alternative for qualifying families. Intermountain Health's network of 400+ clinics across UT, ID, NV, CO, MT, WY, and KS facilitates referral pathways from even the most remote communities.
Riley Hospital for Children at IU Health — Hand Program, Indiana University Health; Indiana University School of Medicine; Consistently ranked among top children's hospitals nationally by U.S. News & World Report
Riley Children's Health / IU Health
Specialty: Pediatric Congenital Hand Differences — Hand Program (Plastic Surgery)
Location: Indianapolis, IN
Contact: Dr. Joshua M. Adkinson, MD — Chief of Hand Surgery, Division of Plastic Surgery, IU School of Medicine. Board-certified by the American Board of Plastic Surgery with Subspecialty Certificate in Surgery of the Hand. Fellowship-trained in hand and microsurgery at University of Michigan (complex adult and pediatric reconstruction). Prior faculty at Lurie Children's Hospital Chicago. Describes himself as one of the few hand surgeons in Indiana who devotes much of his practice to pediatrics. Specialties explicitly include congenital hand differences, brachial plexus injuries, and complex upper extremity reconstruction. 68+ peer-reviewed publications. Founding member of Riley's pediatric brachial plexus injury multidisciplinary team.
Indiana's only comprehensive pediatric hospital and a regional/national referral center for pediatric plastic surgery. The Hand Program provides expert reconstructive surgery for congenital hand disorders including syndactyly (fused digits) and polydactyly — the same presentations seen in Poland anomaly. Key feature for PS families: when a child's syndactyly is associated with a syndrome, the Hand Program surgeons explicitly coordinate care with specialists treating other anomalies — directly relevant to Poland anomaly's multi-system nature. The Plastic Surgery department also includes an Adolescent Breast and Chest Program treating breast asymmetry and gynecomastia, both common Poland anomaly presentations in teens. The program has locations across Indiana, serving families statewide. IU School of Medicine faculty train the next generation of pediatric hand surgeons.
UK HealthCare Hand Center / Golisano Children's at UK (Lexington), University of Kentucky; pediatric orthopedics ranked 40th nationally in partnership with Shriners Lexington
UK HealthCare Hand Center / Golisano Children's at UK
Specialty: Pediatric and Adult Congenital Hand Differences, Comprehensive Hand Surgery
Described as the only comprehensive hand surgery service in Kentucky — fellowship-trained surgeons available 365 days a year for congenital, traumatic, and inflammatory hand conditions across all ages. Integrates both orthopaedic and plastic hand surgeons under one roof with on-site imaging and orthotics. Partners with Shriners Hospitals for Children – Lexington for pediatric orthopaedic cases. Eastern and central Kentucky's only Level IV NICU and PICU. Serves the Appalachian region where subspecialty access is extremely limited.
UNM Children's Hospital / Carrie Tingley Hospital — Hand Surgery (Albuquerque), University of New Mexico — New Mexico's ONLY comprehensive children's hospital and only academic medical center in the state
New Mexico's only comprehensive children's hospital. Uniquely, UNM houses the nation's OLDEST academic division of hand surgery — founded in 1970 by Dr. George Omer, the first academic hand surgery program in the US, having trained 100+ fellows. Fellowship-trained surgeons at UNM Carrie Tingley Hospital treat the full spectrum of congenital differences, trauma, and complex hand conditions. Explicitly serves underserved populations including Native Americans and first-generation Americans — populations often excluded from specialty care directories. Statewide outreach clinics extend reach to rural and tribal communities.
Telemedicine
University of Iowa Stead Family Children's Hospital — Pediatric Hand Surgery & Orthopedics, University of Iowa Health Care; Iowa's only nationally ranked children's hospital; Iowa's only ACS-verified Level 1 Pediatric Trauma Center; University of Iowa Carver College of Medicine
UI Stead Family Children's Hospital
Specialty: Pediatric Hand Surgery — Congenital Hand Differences; Pediatric Orthopedics; Pediatric Plastic & Reconstructive Surgery
Location: Iowa City, IA
Contact: Dr. Joseph A. Buckwalter V, MD, PhD — Hand and Upper Extremity specialist. Fellowship-trained at Washington University, St. Louis. Explicitly treats pediatric congenital hand differences. Research focus on nerve recovery after injury.
Iowa's ONLY comprehensive children's hospital and the only pediatric surgery team in Iowa and western Illinois specifically trained to care for children. The pediatric hand surgery team offers advanced treatment for congenital hand conditions, with care explicitly described as 'personalized plans to help your child grow and thrive.' Key surgeon: Dr. Joseph Buckwalter V, MD, PhD (hand and upper extremity specialist) who explicitly treats pediatric congenital hand differences as part of his practice alongside adult hand conditions. University of Iowa has a world-renowned history in congenital condition treatment — this is where the Ponseti method for clubfoot was developed. The program includes Pediatric Plastic & Reconstructive Microsurgery (nationally ranked by U.S. News), pediatric genetics, and multidisciplinary care. For Poland anomaly families in Iowa, Nebraska, South Dakota, and rural Illinois, this is the primary statewide referral destination.
WVU Medicine Golisano Children's — Orthopaedics (Morgantown), West Virginia University; only academic medical center in West Virginia; Level I Trauma Center
WVU Medicine Golisano Children's Hospital
Specialty: Pediatric Orthopaedics, Congenital Hand and Limb Differences
Location: Morgantown (satellite clinics: Charles Town, Summersville, Parkersburg), WV
West Virginia's only academic children's hospital — typically the sole option for pediatric orthopaedic subspecialty care in the state. Treats congenital abnormalities including extra fingers/toes and congenital limb differences. Satellite orthopaedic clinics in Charles Town, Summersville, and Parkersburg reduce travel burden for families across WV. WVU plastic surgery faculty Dr. Niki Patel has published outcomes research on 683 syndactyly releases from a large academic children's hospital database. Level I PICU and Level IV NICU on site.
Telemedicine
Genetics Programs
Boston Children's Hospital — Division of Genetics and Genomics, Harvard Medical School affiliate
Genetics and Genomics Division works alongside the Hand and Upper Extremity programs. Their congenital limb differences page specifically lists attending physicians from the Division of Genetics and Genomics as part of the care team. Provides comprehensive genetic evaluation for children with congenital limb anomalies.
PA Verified
Children's Healthcare of Atlanta — Comprehensive Limb Difference Program, U.S. News Ranked Children's Hospital
Children's Healthcare of Atlanta (CHOA)
Specialty: Multidisciplinary Limb Difference Evaluation and Treatment
Comprehensive multidisciplinary program for congenital and acquired limb differences. Team includes pediatric orthopedic specialists, physical therapists, orthotists, prosthetists, and child life specialists. Provides evaluation, surgical intervention, cutting-edge prosthetic and orthotic devices, and tailored therapy. Addresses both functional needs and emotional well-being. Closest major comprehensive limb difference program to Mississippi families.
Seattle Children's — Genetic Medicine, NORD Rare Disease Center of Excellence, Undiagnosed Diseases Network member
One of the largest pediatric genetic medicine programs in the US. Only children's hospital in the Pacific Northwest named a NORD Rare Disease Center of Excellence. Clinical genetics team includes experts in arthrogryposis, birth defects, chromosomal differences, growth disorders, dysmorphic features, and vascular anomalies. Evaluates congenital limb differences as part of comprehensive genetic workup.
Telemedicine
UCSF Benioff Children's — Pediatric Medical Genetics & Genomics Clinic, UCSF Medical Center
Evaluates children with birth defects, developmental differences, and suspected genetic conditions. Comprehensive team of medical geneticists and genetic counselors. Initial consultations typically 60-90 minutes including physical exam and medical overview. Coordinates with other pediatric subspecialties.
Rehab & Prosthetics
Arm Dynamics — Upper Limb Prosthetics for Children, Specialized Upper Limb Prosthetic Provider, FAAOP prosthetists
Arm Dynamics (multiple locations nationally)
Specialty: Prosthetic Options for Congenital Hand Differences including Symbrachydactyly
Location: Multiple locations (Portland OR, Houston TX, Minneapolis MN, Dallas TX, and others), National
Specialized upper limb prosthetics provider with multidisciplinary teams of prosthetists, occupational/physical therapists, and technicians. Offers custom prosthetic options for children with symbrachydactyly and other congenital hand differences including partial finger prostheses, passive devices, and activity-specific devices. Published content specifically about symbrachydactyly prosthetic options. Free consultations available in-person or via video.
Mary Free Bed — Center for Limb Differences, Nation's first pediatric amputee clinic (est. 1946), Mary Free Bed Rehabilitation Hospital
Mary Free Bed Rehabilitation Hospital
Specialty: Comprehensive Limb Difference Rehabilitation — Congenital and Acquired
Nation's FIRST pediatric amputee clinic, founded 1946 by Drs. Charles Frantz and George Aiken — pioneers who invented the concept of multidisciplinary treatment for limb differences. Combines orthopedic and prosthetic care with therapeutic and psychosocial disciplines. Team includes pediatric orthopedic surgeons Dr. Michael Forness and Dr. Lisa Maskill, plus physiatrist, pediatrician, psychologist, prosthetists/orthotists, PT/OT, and social worker. Provides prenatal consultations. Published series of condition-specific handbooks for families. Goal is maximizing function and independence from birth through age 18.
Memorial Hermann — Pediatric Hand and Upper Limb Program, Affiliated with McGovern Medical School at UTHealth Houston
Children's Memorial Hermann Hospital
Specialty: Comprehensive Pediatric Hand Rehabilitation, Congenital Hand Differences OT
Comprehensive multidisciplinary program combining plastic surgery and orthopedic surgery with integrated occupational therapy. Treats congenital hand differences from diagnosis through rehabilitation. Team includes surgeons, nurses, social workers, Child Life specialists, and occupational therapists in constant communication. Addresses both physical function and social-emotional needs. Prenatal consultation available when limb differences are detected on ultrasound. Affiliated with Dr. Gogola's current practice.
On The Other Hand — Resource Hub and Community, Founded by pediatric OT with congenital hand difference
Online resource (ontheotherhand.org)
Specialty: Limb Difference Family Resources, OT Guidance, Psychosocial Support
Founded by a pediatric occupational therapist who herself has a congenital hand difference. Provides resources, guidance, and community for families of children with upper limb differences. Maintains a comprehensive resource directory including CoULD Registry hospital list. Content covers body image, responding to questions about differences, age-appropriate messaging, connecting with other limb-different families. Particularly valuable as a lived-experience resource.
Child Psychology
Dr. Leanne Magee, PhD
Children's Hospital of Philadelphia (CHOP)
Specialty: Pediatric psychology specializing in children with appearance differences and craniofacial conditions
Pediatric psychologist embedded in CHOP's Craniofacial Program who specializes in children with visible and appearance differences. Addresses body image, social adjustment, peer relationships, and psychosocial functioning across childhood and adolescence. Published research on psychosocial outcomes in craniofacial microsomia, cleft conditions, and appearance concerns; resource for school re-entry and presurgical psychological preparation.
PA Verified
CHOP — Craniofacial Program Psychosocial Support Services, Multidisciplinary program
Children's Hospital of Philadelphia (CHOP)
Specialty: Psychosocial support for children and families with craniofacial and visible differences
CHOP's Craniofacial Program embeds dedicated psychological support into all care pathways, beginning prenatally and continuing through long-term follow-up. Psychological support covers body image, peer relationships, self-esteem, school re-entry, and pre-surgical preparation — directly relevant to families navigating Poland anomaly.
PA Verified
Dr. Meredith T. Albert, PhD, MA
Shriners Children's Chicago
Specialty: Clinical and pediatric psychology for children with craniofacial conditions
Licensed clinical and pediatric psychologist with over a decade of experience on the Cleft/Craniofacial team at Shriners Children's Chicago. Provides psychological support for children undergoing craniofacial treatment, addressing emotional and social challenges of visible differences. Co-chaired both the ACPA Mental Health/Psychosocial SIG and the APA Society of Pediatric Psychology's Craniofacial SIG; led multi-site research on psychosocial outcomes in craniofacial conditions.
No-cost carePA Verified
Dr. Cindy Ola Trevino, PhD
Seattle Children's Craniofacial Center
Specialty: Pediatric psychology supporting children with craniofacial conditions
Dedicated psychologist embedded in the Seattle Children's Craniofacial Center, serving over 50 specialists across 19 disciplines. Helps children and families understand how craniofacial conditions affect emotional wellbeing and family dynamics; provides coping strategies, psychological testing, and school functioning support. Works alongside social workers to address full psychosocial impact through childhood and adolescence.
PA Verified
Seattle Children's — Craniofacial Center, Multidisciplinary program
Seattle Children's Hospital
Specialty: Comprehensive craniofacial care with embedded psychological services for children with visible differences
One of the largest craniofacial programs in the US, with over 50 experts across 19 specialties. Psychology explicitly listed as a team component with a dedicated child psychologist and social workers. Care provided through young adulthood (age 21). Strong resource for Poland anomaly families in the Pacific Northwest.
Dr. Alessia Johns, PhD, ABPP
Children's Hospital Los Angeles
Specialty: Pediatric psychology for children with craniofacial conditions and visible differences
Board-certified pediatric psychologist (ABPP) and Associate Professor of Clinical Pediatrics at USC Keck School of Medicine. Works within CHLA's Craniofacial and Cleft Center. Leading national voice on psychosocial outcomes in craniofacial microsomia and visible differences; past Chair of the Society of Pediatric Psychology's Craniofacial SIG. Research covers appearance-related concerns, peer relationships, and resilience in children with congenital differences.
PA Verified
Dr. Canice E. Crerand, PhD
Nationwide Children's Hospital
Specialty: Pediatric psychology, body image, and psychosocial outcomes in craniofacial conditions
Principal investigator in the Center for Biobehavioral Health at Nationwide Children's and past Chair of the SPP Craniofacial SIG. Research focuses on psychosocial outcomes in children with craniofacial differences including body image, peer teasing, family functioning, and adjustment. Led multi-site Americleft Project studies; published extensively on appearance-related concerns in pediatric populations.
Exclusively focused on children and adolescents with congenital and acquired limb differences, from birth through age 21. Psychology explicitly listed as a core team discipline providing psychological consultation and counseling on adjustment and body image. Follows patients long-term and connects families with adaptive sports and peer support resources.
PA Verified
Dr. Celia Heppner, PsyD, ABPP (Clinical Health Psychology)
Children's Health / UT Southwestern Medical Center
Specialty: Pediatric psychology for youth with facial differences, chronic illness, and craniofacial conditions
Board-certified clinical health psychologist at Children's Health (Dallas) and Associate Professor at UT Southwestern. Research focuses on quality of life and psychosocial outcomes in youth with facial differences, bullying in medically complex youth, and neuropsychological outcomes in craniosynostosis. Co-authored foundational chapter on psychological aspects of craniofacial conditions; co-investigator on Americleft multi-site project.
PA Verified
Dr. Amy L. Conrad, PhD
University of Iowa Stead Family Children's Hospital
Specialty: Pediatric neuropsychology and psychosocial outcomes in children with craniofacial diagnoses
Clinical psychologist and Associate Professor of Pediatrics-Psychology at the University of Iowa. Research specifically focuses on neuropsychological and psychosocial outcomes in children with craniofacial diagnoses including oral clefts. Key investigator in the Americleft multi-site psychosocial outcomes project since 2012, studying impact of visible differences on social functioning, academic performance, and emotional adjustment.
PA Verified
Dr. Patricia Marik, PsyD
Children's Wisconsin
Specialty: Pediatric psychology for children with craniofacial conditions and visible differences
Associate Professor of Pediatrics at the Medical College of Wisconsin and psychologist embedded in the craniofacial program at Children's Wisconsin. Current Chair of SPP Craniofacial SIG and past chair of ACPA Mental Health/Psychosocial SIG. Research focuses on psychosocial aspects of craniofacial conditions including peer relationships, appearance-related concerns, and family adjustment.
PA Verified
Dr. Hoa Lam Schneider, PhD
Boston Children's Hospital
Specialty: Pediatric neuropsychology specializing in children with craniofacial anomalies and developmental learning disorders
Pediatric neuropsychologist in the Boston Children's Hospital Center for Neuropsychology with specialized expertise in craniofacial anomalies. Instructor in Psychology in the Department of Psychiatry at Harvard Medical School. Provides neuropsychological assessment for children with craniosynostosis, craniofacial anomalies, and related developmental concerns.
PA Verified
Boston Children's Hospital — Hand and Orthopedic Upper Extremity Program, Multidisciplinary program
Boston Children's Hospital
Specialty: Comprehensive upper limb difference care with embedded psychological support
Largest pediatric upper extremity program in the US. Explicitly includes a psychologist with understanding of patients' emotional issues as a named team component. Operates the Congenital Upper Limb Differences (CoULD) Registry — the first multi-center registry studying emotional wellbeing in children with upper limb differences, directly relevant to Poland anomaly's upper extremity involvement.
PA Verified
Shriners Children's — Psychiatry and Psychological Services, Multidisciplinary network
Shriners Children's
Specialty: Pediatric psychiatry and psychology for children with limb differences, craniofacial conditions, and congenital anomalies
National nonprofit health system providing no-cost care to children regardless of ability to pay. Psychiatry and Psychological Services explicitly listed as a specialty across the network, embedded alongside surgical and rehabilitation programs treating limb deficiencies, symbrachydactyly, radial deficiency, and craniofacial conditions — all directly relevant to Poland anomaly.
No-cost care
Children's Health — Fogelson Plastic Surgery and Craniofacial Center, Multidisciplinary program
Children's Health / UT Southwestern Medical Center
Specialty: Pediatric craniofacial and plastic surgery with embedded behavioral health psychology
Premier craniofacial program in the Southwest with an explicit Behavioral Health / Psychology team component. Includes Dr. Celia Heppner, PsyD (ABPP), whose research specifically covers psychosocial outcomes in youth with facial differences. Comprehensive psychosocial support integrated into surgical and medical craniofacial care.
PA Verified
Society of Pediatric Psychology — Craniofacial Special Interest Group, Professional organization SIG
Society of Pediatric Psychology (APA Division 54)
Specialty: National network of pediatric psychologists specializing in craniofacial conditions and visible differences
Connects psychologists across the US who specialize in psychosocial care for children with craniofacial conditions. Members include most named individual psychologists in this directory. Maintains fact sheets for mental health providers on complex craniofacial conditions and can serve as a referral resource to help Poland anomaly families locate a local specialist.
PA Verified
Occupational Therapy
Hand and Orthopedic Upper Extremity Program — Occupational Therapy, Multidisciplinary pediatric hand program; OT team; CoULD Registry founder
Boston Children's Hospital
Specialty: OT integrated into pediatric congenital hand program; CoULD Registry founding center
The Hand and Orthopedic Upper Extremity Program embeds physical and occupational therapists as core team members for all congenital hand differences, including symbrachydactyly, syndactyly, and Poland anomaly-associated hand presentations. The program explicitly notes that symbrachydactyly can be part of Poland anomaly, and its OTs focus on function, independence, and emotional confidence from infancy through young adulthood. Boston Children's founded the CoULD Registry, making this the flagship academic center for outcomes research in congenital hand OT.
PA Verified
Occupational Therapy Program — Hand and Upper Extremity, Pediatric OT/hand therapy; integrated with hand surgery program
Gillette Children's Specialty Healthcare
Specialty: Pediatric hand therapy for congenital differences and post-surgical rehabilitation
Gillette Children's OT program covers disabilities affecting the hands and upper extremities including birth brachial plexus injuries, and provides upper extremity functional and intensive therapy. OT is integrated into specialty clinics including the Brachial Plexus Clinic. Services include custom splinting, constraint-induced movement therapy, adaptive equipment, and bilateral hand skills training. Gillette is a CoULD Registry member with established OT protocols for congenital limb differences. Virtual care options available.
Telemedicine
Center for Congenital Hand and Arm Disorders — Hand Therapy, Pediatric hand surgery and hand therapy; fellowship-trained surgeons
Hospital for Special Surgery (HSS) — Pediatric Orthopedics
Specialty: Integrated hand therapy for congenital hand differences including symbrachydactyly and syndactyly
HSS's Center for Congenital Hand and Arm Disorders explicitly treats symbrachydactyly and syndactyly, and works in close collaboration with hand therapists as described on the program page. The surgical team includes dedicated pediatric hand surgeons and hand therapists, and HSS is a CoULD Registry participating center. The center provides both surgical care and post-surgical therapy for the full spectrum of congenital hand conditions relevant to Poland anomaly presentations.
Pediatric Rehabilitation and Therapy — Occupational Therapy, Pediatric OT; no-cost care for qualifying families; national network
Shriners Children's (National Network)
Specialty: Pediatric OT for limb differences, congenital hand anomalies, and post-surgical upper extremity rehab
Location: Philadelphia (flagship); 15 US locations, National
Shriners Children's nationwide network includes occupational therapy as a named care offering at all locations, and explicitly lists symbrachydactyly, syndactyly, limb deficiencies, and hand anomalies as conditions treated. The Philadelphia location has a named OT (Jessica Zawrotny, MS, OTR/L) and Dr. Scott Kozin, a nationally recognized upper extremity and limb difference surgeon. Care is provided regardless of ability to pay. OT programs focus on functional independence, adaptive equipment, splinting, and bilateral hand skills.
No-cost care
Hand and Arm Disorders Program — Occupational Therapy, Fellowship-trained pediatric hand surgeons; OT integrated; rehabilitation subspecialties
Children's Hospital of Philadelphia (CHOP)
Specialty: OT and rehabilitation for congenital hand differences including symbrachydactyly and syndactyly
CHOP's Hand and Arm Disorders Program is the region's largest center for congenital hand deformities and explicitly lists symbrachydactyly and syndactyly. Occupational therapy is named as a core rehabilitation component: the symbrachydactyly condition page states that OT teaches functional hand use and evolves to include age-appropriate tasks as the child grows. The program runs Camp Rock, a free weeklong rock-climbing day camp for children with hand and arm differences ages 7–14. The team spans orthopedics, plastic surgery, rehabilitation, and OT across seven PA and NJ locations.
PA Verified
Hand and Upper Extremity Center — Occupational and Physical Therapy, Pediatric OT/hand therapy; top-3 nationally ranked orthopedics (US News)
Cincinnati Children's Hospital Medical Center
Specialty: Pediatric hand therapy for congenital differences and post-surgical upper extremity rehab
Cincinnati Children's Hand and Upper Extremity Center offers both surgical and non-surgical treatment for pediatric hand and arm conditions from birth through adolescence. Occupational and Physical Therapy are named explicitly as part of the core multidisciplinary team. The Hand Therapy Program lists birth defects among qualifying diagnoses, and therapists specialize in functional skills including bathing, dressing, eating, and leisure activities. Services span range of motion, strength, and bilateral coordination.
Telemedicine
Hand and Upper Extremity Program — Occupational Therapy, Pediatric OT; CoULD Registry participant; largest OT team in Pacific Northwest
Seattle Children's Hospital
Specialty: OT for congenital hand differences and post-surgical hand rehab; CoULD Registry site
Seattle Children's is the only program in Washington specializing in children's growing hands and arms, and is an active CoULD Registry participant. The program states it has the largest team of occupational therapists in the Pacific Northwest specializing in care of babies through young adults. Symbrachydactyly and syndactyly are both explicitly listed under conditions treated, and OT, Orthopedics, and Plastic Surgery form a unified multidisciplinary team. Prenatal consultations available for families expecting a baby with a congenital hand difference.
TelemedicinePA Verified
Pediatric Occupational Therapy — Congenital Hand Differences Program, OTR/L; multiple OTs with congenital hand specialty; Brachial Plexus Program integration
Ann & Robert H. Lurie Children's Hospital of Chicago
Specialty: Pediatric OT with named congenital hand differences specialists
Location: Chicago, IL
Contact: Kaitlin Brunsvold, MS, OTR/L — Occupational Therapist III, Congenital Hand Differences; Kristina Stein, OTR/L — Occupational Therapist/Clinical Coordinator, Congenital Hand Differences
Lurie Children's OT program has two publicly named therapists — Kaitlin Brunsvold, MS, OTR/L and Kristina Stein, OTR/L — who both list Congenital Hand Differences as a special interest and are connected to the Brachial Plexus Injury Program. The program covers fine motor skills, bilateral coordination, upper extremity range of motion and strength, functional independence, and school-based participation. Services available at six outpatient locations throughout greater Chicago.
TelemedicinePA Verified
Occupational Therapy — Hand Therapy Program, Pediatric OT; AOTA-accredited OT fellowship; hand therapy specialty program
Nationwide Children's Hospital
Specialty: Pediatric hand therapy program within major children's hospital OT division
Nationwide Children's OT division includes a named Hand Therapy program and custom splints and pressure garments as distinct subspecialty services. The program serves children with hand injuries, decreased strength or limited movement in the shoulder/arm/hand, and conditions involving specific bones and muscles. The hospital hosts an AOTA-accredited Pediatric Occupational Therapy Fellowship, indicating strong academic depth. Inpatient and outpatient clinics on the main Columbus campus plus satellite locations.
Congenital Hand Differences Program — Occupational Therapy, Plastic surgery-based hand therapy; OT functional evaluation protocol
Children's Hospital Los Angeles (CHLA)
Specialty: OT-led functional hand evaluation and therapy for congenital hand differences
CHLA's congenital hand differences page describes a formal protocol in which an occupational therapist administers a functional hand evaluation — observing grasp and hand use during play — before any surgical decision is made. Symbrachydactyly and syndactyly are both explicitly listed as conditions treated. Post-surgical hand therapy with the OT is described as standard care to maximize hand function after splint removal, including stretching and splinting programs and education on performing activities differently to maximize independence.
PA Verified
Hand and Upper Extremity Program — Occupational Therapy (Texas Children's), Certified Hand Therapists (CHT); fellowship-trained surgeons; integrated OT
Texas Children's Hospital
Specialty: Pediatric OT and certified hand therapy integrated with congenital hand surgery program
Texas Children's Hand and Upper Extremity Program lists Certified Hand Therapists (OT/CHT) as members of the multidisciplinary team alongside fellowship-trained hand surgeons. Symbrachydactyly and syndactyly are explicitly listed under congenital anomalies treated. OT and hand therapy addresses pre- and post-surgical care across multiple Texas Children's locations including West Campus, Bellaire, Cy-Fair, and North Austin.
Organizations & Camps
AISP — Associazione Italiana Sindrome di Poland (Italian Poland anomaly Association), Founded 2003, Genoa, Italy. Affiliated with Policlinico San Martino Hospital and University of Genoa.
Italian patient organization founded by parents in 2003. Produced the landmark 2020 international consensus clinical guidelines for Poland anomaly classification and treatment (the TBN classification system). Operates a multidisciplinary clinical model including psychologists, social workers, and pedagogists alongside medical specialists. Has conducted published research on diagnostic delay (average diagnosis age ~14 years, only ~32% diagnosed at birth). Affiliated with Policlinico San Martino IRCCS Hospital, University of Genoa, and the Gaslini Institute. Contact: segreteria@sindromedipoland.org. Primary research partnership candidate for Poland Foundation's scientific advisory work.
PA Verified
Amputee Coalition / National Limb Loss Resource Center (NLLRC), 501(c)(3) nonprofit; federally funded NLLRC; 40+ years of service; 300+ support groups nationwide
Amputee Coalition (Washington, DC headquarters; national reach)
Specialty: National Peer Support, Education, Advocacy, and Resources for Limb Loss and Limb Difference
The largest national organization serving individuals with limb loss and limb difference, including those born with congenital hand differences. Key resources directly relevant to Poland anomaly families: (1) National Limb Loss Resource Center — the only federally funded resource center of its kind; provides free information, guidance, and support by phone and online. (2) Peer Support Program — 800+ trained volunteer peer mentors with lived experience, available one-on-one. (3) 300+ support groups nationwide, including virtual and youth-specific groups. (4) Youth Engagement Program (YEP) — for ages 10-19; mentorship, skills training, career development. (5) Youth Camp — annual 4-day camp in Florida for ages 10-17. (6) 40+ bilingual guides (English and Spanish) and 70+ fact sheets on living with limb difference. (7) Healthcare Navigator program — helps families navigate insurance coverage and find care providers. Serves 5.6+ million Americans with limb loss and limb difference. Annual national conference. April is Limb Loss and Limb Difference Awareness Month.
Camp No Limits, 501(c)(3) nonprofit, founded 2004, 600+ volunteers, Hanger Foundation partnership
National nonprofit (headquarters in Maine)
Specialty: Residential Camps for Children with Limb Loss/Limb Difference and Families
Structured camps with OT/PT life skills sessions, biking/running clinics, peer support groups (separate groups for siblings, campers, teens, parents), adaptive recreation. HAS A TENNESSEE LOCATION — closest camp to Mississippi families. Scholarships available through Hanger Foundation. Virtual programs also available. No Limits Educational Series for healthcare professionals. Activities include ropes courses, swimming, kayaking, archery, talent shows. Program fee $500/person with scholarships. Founded 2004 at Pine Tree Camp in Maine, now spans the country.
Camp Winning Hands, Free overnight camp; co-organized by UCSF Benioff Children's Hospital Oakland and Shriners Children's Northern California; hosted by Taylor Family Foundation
Camp Arroyo, Livermore, California (annual summer camp, typically July or August)
Specialty: Free Summer Camp for Children with Congenital Hand and Upper Limb Differences — Ages 7-17
The ONLY free summer camp specifically for children with limb differences west of the Rocky Mountains. Established 2010. Approximately 60 children attend each year, ages 7-17. Kids Camp (ages 7-11) and Teen Camp (ages 12-17) offered. Activities include archery, rock climbing, zip-lining, swimming, arts and crafts — all modified for limb differences. 'Teen Talk' program provides safe space for older campers to discuss body image, responding to questions, and navigating daily life with a visible difference. All counselors are volunteers from UCSF and Shriners, many with their own limb differences — powerful role models. Parents connect and share information during camp, building a lasting family community. Symbrachydactyly — the primary Poland anomaly hand presentation — is explicitly listed among the conditions served. FREE for all participating families. Funded by the Taylor Family Foundation, UCSF Benioff, and Shriners. Campers travel from across the western US specifically for this camp.
No-cost carePA Verified
Children's Hospital Colorado — Limb Differences Program, Children's Hospital Colorado; only comprehensive multidisciplinary limb differences program in the Mountain West region
Children's Hospital Colorado
Specialty: Congenital and Acquired Limb Differences — Full Multidisciplinary Team Including Integrated Psychologists
The ONLY multidisciplinary limb differences program in the Mountain West region. Directly relevant to Poland anomaly: explicitly treats congenital limb differences and co-manages upper extremity cases with their Hand and Upper Extremity Program. Psychologists and social workers are integrated members of the care team — specifically described as specialists in body image, emotional adjustment, and family support before, during, and after treatment. This directly addresses the documented gap of psychological support for PS families. Long-term follow-up model — clinic follows patients through all growth stages. Children and families can connect with others in similar situations.
Hands To Love, Nonprofit, annual Hand Camp in Florida
Nonprofit organization
Specialty: Family Weekend Camp for Upper Limb Differences
Location: Starke, FL (Camp Crystal Lake — annual March weekend), FL
Annual Hand Camp specifically for families with children who have upper limb differences. Weekend of adventure, camaraderie and relaxation at Camp Crystal Lake in Starke, FL. Children try new activities, meet others with similar differences. Parents network, share experiences, receive pampering. Safe haven for kids to be themselves.
Limb Difference Collective Foundation, 501(c)(3) nonprofit (EIN 33-3938100), based in Illinois
Nonprofit organization
Specialty: Limb Difference Family Resources, Community Connection, Camps Directory
Maintains one of the most comprehensive listings of camps and programs for limb-different children nationwide. Connects families to resources, support, and opportunities. Run by families in the limb difference community sharing what they've found helpful. Good aggregator resource for families looking for age-appropriate programs.
LittleArms.org, Educational resource managed by Dr. Dan Zlotolow (HSS/Shriners Philadelphia)
Online educational resource
Specialty: Educational Content on Pediatric Upper Limb Conditions
Educational resource created by leading pediatric hand surgeons. Provides family-friendly information about congenital upper limb conditions, treatment options, and surgeon profiles. Multiple contributing surgeons from around the world including members of PHISOS (Pediatric Hand International Society of Surgeons). Good resource for families researching their child's specific condition.
Lucky Fin Project, 501(c)(3) nonprofit, founded 2010, 89K+ Facebook followers, 106K+ Instagram followers
National nonprofit (based in Royal Oak, Michigan)
Specialty: Symbrachydactyly and Upper Limb Difference Awareness, Family Support, Community Building
Location: Royal Oak, MI (annual weekend in Troy, MI every July; state-level chapters nationwide), National
DIRECTLY RELEVANT — founded specifically for symbrachydactyly (the exact hand presentation in Poland anomaly). Founder Molly Stapelman's story mirrors Poland Foundation founder's story: daughter Ryan born with hand difference, felt isolated by lack of resources, built the organization from scratch. Annual Lucky Fin Weekend draws 1,200+ attendees. Has handcrafted and distributed 25,000+ awareness bracelets. State-level chapters for local connection. Financially supports camp attendance, prosthetics access. Featured by Associated Press, Amplitude Magazine. Led #NotAWitch movement against harmful Hollywood depictions. Key quote: 'A child being born with a limb difference is not tragic.' NATURAL PARTNERSHIP FOR POLAND FOUNDATION.
PA Verified
Lurie Children's Hospital — Limb Deformities and Congenital Limb Differences, Ann & Robert H. Lurie Children's Hospital of Chicago; Northwestern University Feinberg School of Medicine
Major Midwest pediatric program treating congenital limb differences including syndactyly and upper extremity differences consistent with Poland anomaly. Works closely with the Chicago Institute for Fetal Health to provide prenatal consultations when limb differences are detected in utero — a critical touchpoint for Poland anomaly families who receive prenatal diagnosis. Team spans orthopedic surgery, plastic surgery, genetics, endocrinology, neurosurgery, and rehabilitation medicine. Orthotics and prosthetics integrated. Northwestern University academic affiliation. Multiple suburban locations across Chicagoland reduce travel burden for Midwest families.
NubAbility Athletics Foundation, 501(c)(3) nonprofit, 70+ limb-different coaches, 74 camps in 20 states
National nonprofit (based in Du Quoin, Illinois)
Specialty: Adaptive Sports Camps for Limb-Different Youth — No Prosthetics Required
Location: Du Quoin, IL (camps in 20+ states including Arizona, Illinois, Montana, Minnesota, North Carolina, Texas), National
Unique philosophy: teaches kids to play sports WITHOUT prosthetics first, then with if desired. All 70+ coaches are limb-different athletes themselves — role models who demonstrate what's possible. Sports include baseball, basketball, soccer, football, golf, swimming, track. Founded by a family with a limb-different son. Emphasizes that kids can do anything — 'don't let anyone tell you what you can't do.' Strong social media presence and national reach.
PIP-UK (Parents Information Portal — Poland anomaly Support and Network), UK Registered Charity No. 1188941
PIP-UK
Specialty: Poland anomaly Patient Advocacy, Support Network, International Patient Registry
UK-based charity raising awareness of Poland anomaly and supporting affected individuals and families internationally. Operates the Poland anomaly Community Register — an international patient registry collecting longitudinal health and quality-of-life data. Produces the 'Living Well with Poland anomaly' mental health program for ages 16-25. Has held annual family conferences and clinic days at Birmingham Children's Hospital. Active in Scotland, England, and growing internationally. Led by CEO Sam Fillingham. Contact via website form or paul@pip-uk.org. Closest organizational model to what Poland Foundation is building in the US. Potential collaboration and registry data-sharing partner.