We empower & support people with Poland Syndrome to live well providing 121 support, advocacy, wellbeing programmes, early diagnosis help, peer support, ways to connect. We need your help to continue this work and continue to change lives.
In 2022 we launched our Global Poland Syndrome Community Register. We have made a start with the launch and getting nearly 200 people engaged, but now we need your help to vote for our video and share our message with the world.
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.
That is where this video campaign comes in.
It is vital that we secure your vote and generate awareness so we can find everyone in the world with Poland Syndrome and have them register too.
Our Global Poland Syndrome Register connects families and transforms 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 by voting for our film. Thank you!
We align with the following UN Sustainable Development Goals: