We protect the UK's only specialist Poland Syndrome register and clinical pathways. This project funds the expert coordination needed to safeguard care for 300+ families worldwide. This safeguards the UK's only specialist clinical pathway and community register for Poland Syndrome. We provide the operational capacity to maintain expert coordination and data security, ensuring families continue to receive specialist care while we develop a sustainable long-term model for these unique assets.
Poland Syndrome (PS) is a rare condition (1:20,000) causing chest and limb differences. Families face a "postcode lottery" for care; most GPs have never seen a case, leading to misdiagnosis. There is only one specialist clinical pathway in the UK (Birmingham Children's Hospital). If our coordination and Community Register are lost, 300+ families will lose their only link to expert care, leaving them to navigate a complex, uninformed medical system without any specialist support.
We leverage a unique public-charity partnership where NHS consultants volunteer their time for specialist PS clinics. This project funds the essential "bridge" that makes these clinics viable: Professional liaison to coordinate specialist hospital pathways. 20+ hours of 1:1 family support to navigate diagnosis and surgical decisions. Management of the UK's only PS patient register. Providing peer support and clinical resources to reduce isolation for children and parents.
We aim to move PS care from isolation to excellence. By safeguarding our Register and clinical partnerships, we ensure 15 years of expert knowledge remains a permanent asset. Impact includes: Improved surgical outcomes via expert-led care. Resilience for 300+ families via a permanent peer network. Secure, GDPR-compliant data for international research. Strategic stability to eventually integrate these pathways into national healthcare frameworks for the long term.
Support this important cause by creating a personalized fundraising page.
Start a Fundraiser
