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, appeals & connecting the community via our events & groups. We are lucky to have secured several key grants over the last couple of years. But the reality is, to maintain our current trajectory to make forever change for Poland Syndrome, we need your help!