What this is actually for
There is a moment we are trying to make possible. A kid with Poland anomaly finds another kid with the same hand. Not someone who is kind about it. Not a doctor who explains it. Someone who has it. Someone who gets it without being told. And something shifts for that kid — not because the condition changed, but because they are not the only one anymore.
That is what this is for. The information, the directory, the community — all of it is in service of that moment. The same and special. Not different and alone.
We are not there yet. But that is what we are trying to build, one piece at a time.
Why this organization exists
Poland anomaly affects an estimated 1 in 20,000 to 1 in 30,000 people — roughly 150 new diagnoses in the United States every year. Despite that, no US nonprofit had ever been dedicated to it. Families receiving the diagnosis found fragmented information, no organized community, no specialist directory, and no institution doing the work of connecting patients to care.
Poland Foundation was established after a US family encountered Poland anomaly firsthand and discovered that gap. Getting the right care requires more than most families expect — knowing which specialists have actually treated this condition before, whether insurance will cover it, and sometimes whether you can afford to travel to find the right surgeon. Some families can piece that together on their own. Many cannot. Poland Foundation exists to make it easier for all of them. The foundation is incorporated in Mississippi and is organized as a 501(c)(3) nonprofit.
Poland Foundation is the first nonprofit in the United States dedicated solely to Poland anomaly. We are building the infrastructure this community has never had — one page, one resource, one family at a time.
What we do
Our work falls into three areas:
Education. This website is the most comprehensive free resource on Poland anomaly available in English. Every page is written for patients and families — not for clinicians — and is optimized to appear in search results and AI answer engines when someone types a question about Poland anomaly at midnight on their phone. We follow a strict evidence-based, organizationally neutral tone. No founder story in prominent positions. No fundraising pressure woven into medical information. Just accurate, useful content.
Specialist access. Our provider directory contains nearly 100 specialists across the United States with documented Poland anomaly experience — plastic surgeons, hand surgeons, pediatric surgeons, and more. It is the only directory of its kind. Families no longer have to find these providers through word of mouth in Facebook groups.
Community and support. Poland anomaly is rare enough that most families never meet another family with the same diagnosis. We are building the infrastructure to change that — through our community forum, our annual conference, and our travel assistance program for families who must travel to reach a specialist.
Our approach
Poland Foundation takes a deliberately organizational tone. This is not a personal blog. It is not a family story website. It is a nonprofit institution, and its credibility depends on that distinction. The medical content on this site has been researched against peer-reviewed literature. Where clinical guidance is provided, it reflects current medical consensus. Where information is uncertain or variable, we say so.
We are a new organization. The 501(c)(3) application is pending. The forum is being built. The conference is planned but not yet running. We are transparent about what exists today versus what is coming, because families deserve accurate information — including about us.
Based in Mississippi. Built for every Poland family in America.
Poland Foundation is headquartered in Madison, Mississippi. Our reach is national. The condition does not concentrate geographically, and neither does our work. Families in rural Montana and families in New York City face the same challenge: almost no one around them has heard of Poland anomaly, and almost no resources were built specifically for them.
That is what we are changing.
People with Poland anomaly
From a two-time Formula One World Champion to a girl who threw a baseball at all 30 Major League stadiums, the people who have lived full lives with Poland anomaly are proof that this diagnosis is not a ceiling. See our People With Poland Anomaly page — written especially for children and families who just received a diagnosis.
Get involved
Poland Foundation is new and actively being built. There are several ways to be part of it:
- Tell us what we got wrong or missed — patient and family experience is the most valuable thing we can receive right now
- Support our mission — donations fund the specialist directory, the community platform, travel assistance grants, and this website
- Contact us — for partnership inquiries, provider nominations, media requests, or anything else