PIP-UK Poland Syndrome Support and Network

RCN 1188941, Stockport

We support anyone who is affected by the rare condition, Poland Syndrome (PS). We connect people through our Poland Syndrome Community Register (PSCR), bring people together (virtually or in person) so they are not travelling their road alone, advocate for families to make sure they get the earliest diagnosis and the best medical pathway, successfully challenge NHS decisions regarding treatment where necessary, improve mental health and self-esteem in young people, particularly girls and women, and, most crucially, work with ambassadors who are living with PS to raise awareness of PS in the wider community. Our ultimate aim is to transform and empower the NHS so they can fully understand, diagnose, treat and support the PS community in a much more flexible and holistic way.

My name is Sam and I would like to share my story with you. A story of a mum, overcoming many obstacles to get the right diagnosis for her young son, and being inspired enough to set up and lead a brand new charity, which is now poised to bring about incredible change.

My story starts with confusion, loneliness and uncertainty when I struggled to get the correct diagnosis for my young son. My GP didn’t understand my concerns, I felt unheard and dismissed by medical professionals, and found it difficult to find the platform I needed to make my voice heard. 

Nevertheless, I persevered. 

I eventually received a diagnosis of Poland Syndrome (PS)* for my son, finally getting him on the right medical pathway. I sought out other families who had gone through the same experience and we knew that something had to change, somebody had to do something to raise awareness of this rare condition, to reach more families, and educate medical professionals.. That “somebody” was us.

We set up PIP-UK in 2011, initially as a community group, to raise awareness of Poland Syndrome and to improve the lives of people living with PS. We set up a website so that information could be found in one place, as well as a Facebook page so that we could share stories, and we could connect with others. Some of the families we connected with were just like us, struggling to get the right diagnosis for their children. But we also realised that many people had lived much of their lives without a proper diagnosis of PS, leading to low self-esteem and, in the case of women, sometimes a deep sense of shame due to their physical differences especially in the chest area, with only one breast being developed. 

But more had to be done. And we were just the people to do it! Our incredible band of volunteers gave tireless of their time and energy, raising funds so that we could take forward the things we, as a community, had identified as key targets:

  • Educate medical professions about Poland Syndrome to raise awareness and improve patient experience
  • Provide a support network for people with Poland Syndrome and their friends and family members
  • Signpost people to the right medical professionals who can give the right advice

We did this by:

  • connecting our community through the Poland Syndrome Community Register
  • working with ambassadors to raise the profile of PS, eg, Dr Kim Daybell, Paralympian and Jnr Doctor, who is already raising awareness of PS within the NHS, Lewis Hatchett, cricketer, Richard Stott, comedian, Becca Butcher Content Creator & Mental Health Advocate
  • hosting an annual Family Fun day to bring families together for peer support (a mix of in-person and online)
  • implementing a Pilot Year of events and activities to support mental health and self-esteem amongst young people, women, and families of young children recently diagnosed with PS. This is particularly important at the moment as The Rare Reality of Covid-19 report highlighted that 66% of people in the rare disease community, of which we are part, say the interruption to their care has been detrimental to their wellbeing. 
  • taking the lead from the model set out by the Italian PS Association (AISP) and reviewing how this model can be implemented in the UK
  • raising awareness of PS through our website, Facebook page, support packs to families and schools, and through the Rare Disease network.
  • advocating for individuals and families so they know what to ask when seeing a medical professional, resulting in early treatment pathways including successful appeals against NHS

Our reach and impact grew so much that we took the step to become a charity in 2020 (charity number 1188941). This has helped us attract funding grants, for example, the National Lottery Community Fund. Members of our community are not just volunteers and ambassadors, but active members of our Board of Trustees. We will make sure the voice of our community is heard, and is at the heart of all we do. 

We now have bold and ambitious plans. And we need your help to turn these plans into a reality. We are changing perceptions and influencing public health strategy at a national level through the work of our advocate Dr Kim Daybell. We need your support to move to the next chapter of our development, transforming our team from a fledgling charity to a world-leading agent of change.

Thank you for your consideration. Please help us continue our story…

Our Vision

We will be the centre of expertise for Poland Syndrome Research, Wellbeing & Support Services and Connection.

Our Mission

Advocate for earlier, consistent diagnosis and treatment paths for the Poland Syndrome community. Building awareness for Poland Syndrome and providing support to the community.  

Charity Projects