Welcome to PIP-UK
We are non-profit organisation who are dedicated to helping support people who have poland syndrome. We have created this site to be a hub of activity to help anyone who wants to make informed choices about Poland Syndrome from the very young to the old, for friends, family members or medical professionals.
The beautiful little boy in the picture is our inspiration for PIP-UK. There are many children born in the UK and across the world with a rare syndrome called Poland Syndrome
. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community.
What is Poland Syndrome?
Poland syndrome is visibly seen by a smaller hand (which may include webbed fingers at birth) and this is frequently accompanied by an under-developed chest on the same side. The degree of severity of Poland Syndrome and it’s symptoms differs between people but thankfully for the majority of people it is not life threatening.
Poland Syndrome is often not diagnosed at all. In fact since the inception of PIP-UK we have come across many stories of people who were well into adulthood before they even knew they had Poland Syndrome.
What is PIP-UK?
PIP-UK was founded in 2011 by Sam Fillingham and Liz McKenna. Sam’s story started the day after her son was born with Poland Syndrome in 2008, the challenges they faced in his first few weeks and years and the way they overcame it as a family was inspiring. 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. Sam is doing a fantastic job and couldn’t do it on her own. She has a group of loyal trustees helping her and PIP-UK with their journey. Liz McKenna, Shirley Proctor, Angel Scott-Bottoms, Sue King, Louise Marshall, Robbie Woods and Victoria Bedwell..
What is PIP-UK doing?
PIP-UK has 4 main aims:
Foster partnerships with Medical Professionals
Raise awareness in professional networks
As the saying goes a problem shared is a problem halved… we have videos from lots of different people on the site in our shared experiences section which talk about all sorts of things from how to drive a car to tying up shoe laces. We also share inspirational stories of athletes and musicians and others who demonstrate that Poland Syndrome should not hold you back from anything!
Why does PIP-UK exist?
When we started PIP-UK our founder had one clear goal…..
I want people to be able to search Google for Poland Syndrome and find the information and support that I really needed. I want to ensure no-one with Poland Syndrome is ever alone in their journey again.
However you arrived here we are pleased to meet you. Do drop us a line even just to say hello we always enjoy meeting new people.