The Poland Syndrome Community Register has been in the making for ten years. It is based on a tried and tested model adopted by the Italian Poland Syndrome Association to generate scientific activity into Poland Syndrome.

This register is how we are going to finally get all our voices heard and improve the diagnosis and treatment for Poland Syndrome.

In signing up to this register and completing the surveys you are part of the creation and ongoing development of a Poland Syndrome specific international data resource which benefits the Poland Syndrome Community by:
1. Increasing understanding of Poland Syndrome
2. Encouraging an efficient and timely diagnosis
3. Enabling progress in research and clinical trials
4. Facilitate the development of treatment for Poland Syndrome

Many thanks to Nan, Becca, Kim, Richard, Lewis, Gift, Gene, Stuart, Manuel, Lily, Sydney, Rupinder, Trudie and Ericka for sharing their experiences.

To find out more please visit https://pip-uk.org/poland-syndrome-co...