PIP-UK Poland Syndrome Support

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 Patient Groups / Posted 11 months ago by Sam Fillingham / 633 views

Poland Syndrome is characterized by an underdeveloped or absent chest muscle on one side of the body, absence of the breastbone portion (sternal) of the chest muscle, and webbing of the fingers of the hand on the same side. The cause of Poland syndrome is not known. This syndrome is nearly always sporadic. It tends to occur on the right side and is more common in boys than girls. It is a rare condition, which doesn’t have a great deal of research and it often goes undiagnosed. Sam has used her experience and love for her son to create PIP-UK to raise awareness of Poland Syndrome, create a community of people living with the syndrome, both direct and family members, they offer support by being a first point of contact for anyone who needs it. PIP-UK has recently secured National Lottery Funding to create a Poland Syndrome Community Register, the foundation of building a better patient experience for everyone with Poland Syndrome.

Our new 4 main aims are:
💚 Foster partnerships with Medical Professionals
💚 Support 
💚 Signpost
💚 Raise awareness in professional networks