PIP-UK Poland Syndrome Support & Network
We support families affected by Poland Syndrome with Wellbeing, Support Services & Connection.
Poland Syndrome (PS) is a rare condition affecting 1 in 20,000 births. It is visibly seen by a smaller hand and this is frequently accompanied by an under-developed chest. The degree of severity differs and PS is often not diagnosed at all – many people are adults before they are diagnosed.
We support our community with the following activities and services:
– Assisting people to get an early diagnosis
– Creating pathways to treatment where none exist
– Connect people to vital peer support
– Creating a voice for an invisible community with scientists & medics
– 121 Advocacy, Wellbeing & Family support services
– Community Events
– Specialist Children's Clinic at Birmingham Children's Hospital
– Talks & presentations to medics