Our Plans and Vision
We have ambitious plans for 2021 and beyond. They are set out in the presentation below. Please take a look and get in touch if you would like to be a part of the plans or provide feedback.
Poland Syndrome Community Register Project (PSCR)
In 2020 we were awarded a national lottery grant to work on this important project. This project is the foundation to improving the the lives of people living with Poland Syndrome. We need to understand where everyone with Poland Syndrome lives, what symptoms they have and how it effects their daily lives etc. We need this information to improve the diagnosis and therapeutic interventions. This will enable to us to conduct research and improve the health outcomes for the Poland Syndrome Community.
Our 4 Main Aims
In 2020 we reviewed our main aims with our members. They were refreshed to reflect what our members want from the charity and to ensure we are explicit in how our aims will help us to achieve our goals for the Poland Syndrome Community Register Project.