In 2022 we launched our Global Poland Syndrome Community Register. We have made a start with the launch and getting over 100 people engaged, but now we need your help.

Our global patient community, mainly children and young adults, is geographically dispersed, knowledge is limited and researchers have few resources to study the condition. Registers are a powerful aid to understanding the nature, variations and natural history of a disease. A registry needs to be sustainable and successful over the long term for the best chance of having a real influence on research. There are currently no specific funding streams for rare disease registers.

At PIP-UK, we are working hard to support people with 121 advice, advocacy, NHS referrals and appeal and connecting the community via our events and groups. We have been very lucky to have secured several key grants over the last couple of years. And we are continuing to pursue ongoing funding opportunities. But the reality is, to maintain our current trajectory, we need immediate and ongoing funding.

We are working on grants, corporate fundraising and reigniting community fundraising after Covid-19 as long range strategies. However, we also desperately need some short term funding sources too. That is where this campaign comes in.

It is vital that we secure the funds to maintain and grow our Global Poland Syndrome Register, which will connect families and transform real-world healthcare data into real- world evidence. The register is a key tool in the struggle for researchers throughout the world to advance understanding - it aims to improve outcomes and quality of life, develop effective therapies and treatments and will put our Poland Syndrome community at the centre of research.

Having a Patient Register with essential data will allow researchers to study common aspects among the different conditions caused by variations in Poland Syndrome; increase the visibility of Poland Syndrome so the lives of families navigating the many health concerns caused by the syndrome may be improved through research and clinical trials; document how the different people present with different outcomes & work out how we can help with this; investigate different surgical outcomes; and assist researchers anywhere in the world interested in Poland Syndrome.

Together we are making a forever change to diagnosis, treatment and long term wellbeing for everyone with Poland Syndrome.

You can join us

We need to raise £10,000 to pay for the register, our staff and all the other core costs associated with it this year. This a small percentage of the £50k per year it takes for us to successfully work on all of our aims for a year including family days, supporting the clinics, running Living Well Programmes and Women Circles and much more. We want to ensure that no one ever feels alone with Poland Syndrome and everyone is able to access informed medical care and advise. Please consider a donation or starting a fundraising challenge today to help us meet our goals for the Poland Syndrome Community. Thank you.