New stretch target
PIP-UK Poland Syndrome Support & Network began in 2011 to raise awareness and support individuals with Poland Syndrome (PS). Initially a community group, we gained charity status in England and Wales in 2020 and expanded to the West Midlands and Scotland in 2023. We are working on expanding to other regions in the UK and around the world through 2024/25.
PS is a rare congenital limb difference characterised by underdeveloped or absent muscles, bones, or organs on one side of the body. Diagnosis challenges often lead to social exclusion and mental health struggles for both parents and young people. Families endure accusations of maltreatment, adolescents endure prolonged social torment, and adults grapple with enduring mental health repercussions, all while often concealing their physical differences. The absence of specialised medical professionals exacerbates the difficulty in diagnosing and treating PS.
Our mission is to support & advocate for the PS community, ensuring equitable treatment. We provide personalised support, host community events, and run advocacy and wellbeing services. Collaborative clinics like those at Birmingham Children's Hospital aim to provide comprehensive care, something we want to secure for the long term and expand to other regions and countries around the world with your help.
