Poland Foundation launched with the best research we could assemble — published medical literature, clinical consensus guidelines, a provider directory built from publicly available data, and content written to answer the questions families are actually searching for.
What we have not had yet is systematic input from the people who actually live with this condition. No US organization has existed to build that knowledge base. That changes now — but only if the community helps build it.
Poland Foundation was established after a US family encountered Poland anomaly firsthand and found almost nothing to guide them. That experience is not unique. It is shared by virtually every family who receives this diagnosis. This foundation exists because of that gap — and the community that fills it will determine what it becomes.
Who we need to hear from
Every person in the Poland anomaly community has something this site needs. Here is where the gaps are most visible:
Parents & Families
You know what it feels like to search
- What questions did you have that nobody answered?
- What did we oversimplify or get wrong?
- Which specialists actually helped your family?
- What resource do you wish had existed at diagnosis?
- What does the emotional reality actually look like?
Adults with Poland Anomaly
You know this from the inside
- Does the information here reflect your experience?
- What do you wish parents understood?
- What did doctors get right — or consistently wrong?
- What parts of living with this condition are missing from the picture?
- Would you share your story for others to read?
Clinicians & Providers
You have expertise we don't
- Is the medical content accurate? What needs correction?
- Are you treating Poland patients and not in our directory?
- What do families consistently misunderstand?
- Are there guidelines or research we should be citing?
- Would you be willing to review specific pages?
What is on this site right now
So you know what you are evaluating when you explore it — and where the gaps are:
What is not here yet: personal stories from the community, provider-verified directory listings, clinical review of all content, Spanish translation, and pages written from lived experience rather than published research. These are active priorities. Community input determines what gets built next.
This site will always be a work in progress
The provider directory will never be finished — new specialists emerge, others retire, and families constantly discover physicians who belong here. The medical content will be updated as research evolves. New resources will be added as the community identifies what is missing.
That is not a limitation. That is what a living resource looks like. Poland Foundation is committed to maintaining and improving this site for as long as the Poland anomaly community needs it.
Ready to help make this better?
Every correction, provider nomination, and piece of feedback from someone with real experience makes this site more useful for the next family that finds it.