PIP - UK Poland Syndrome Support

PIP - UK Poland Syndrome Support UK charity for Poland Syndrome a rare birth difference. Find us on Instagram, TikTok, Twitter & Lin Well we're here to tell you that's not the case.

PIP-UK is dedicated to providing a network of support and education for Poland Syndrome. This is a rare syndrome, so rare that is frequently not diagnosed until late into a child's life. We have already met a lot of adults who didn't find out they had Poland Syndrome until they were well into adulthood. People with Poland Syndrome or friends and family members have often felt like they are the onl

y person in the world or in their location who have this. Come see our website! We'll introduce you to lots of different people who tell their own stories, share their experiences and give some great tips for how to overcome some day to day obstacles. If you'd like to support PIP-UK you can make a donation by clicking on this link http://pip-uk.org/donate

Thanks for your support

Our good friends at LimbBo Foundation UK need our support and this could affect our community too so if you are in the U...
17/06/2026

Our good friends at LimbBo Foundation UK need our support and this could affect our community too so if you are in the UK please sign the petition and share far and wide to help get this to parliament.

https://petition.parliament.uk/petitions/770298

A huge thank you to Reo, Minnie, Milly, Robbie and all the family for raising an amazing £75 for PIP - UK Poland Syndrom...
15/06/2026

A huge thank you to Reo, Minnie, Milly, Robbie and all the family for raising an amazing £75 for PIP - UK Poland Syndrome Support at a recent school fair by making and selling jewellery.

The family have been an integral part of our community since the early days and we are so grateful to you all and the funds raised will help us to bring together young people in our young ambassadors project.

We are so proud of how you confidently raised awareness on Poland Syndrome on the day too. Thats more people in this world that know about our rare condition because of you.

Thank you all!

If you would like to raise money for PIP-UK and support our young people, you can get some ideas and information on where to start here: https://pip-uk.org/help-us-to-help-you

Remembering Ron King: A True Founding Father of the PIP-UK CommunityIt is with a heavy heart, but with a profound sense ...
12/06/2026

Remembering Ron King: A True Founding Father of the PIP-UK Community

It is with a heavy heart, but with a profound sense of gratitude for a life beautifully lived, that we share the news of the passing of our dear friend, supporter, and benefactor, Ron King.

To many of us, Ron was the foundational anchor of the Poland Syndrome community. A scientist by profession throughout his career, Ron brought his brilliant analytical mind, his sharp curiosity, and his immense generosity to PIP-UK.

When Ron received his diagnosis later in life, in his 80s, his very first instinct was not to look inward, but to look outward. He immediately picked up the phone, called us, and asked a simple, powerful question: “How can I help?” From that single phone call, Ron became integral to our mission. He spearheaded and championed the creation of our international patient registry, providing the vital backing and encouragement we needed to make lasting headway. He lived his life, and led our community, by a signature mantra that will echo in our hearts forever: "There is no such word as can't."

Funeral Arrangements & Tributes

Ron’s family have kindly invited members of the community who knew and loved him to join them in celebrating his life, or to leave a message of condolence.

Funeral Details: [Funeral service is at St Mary & All Saints, Beaconsfield on Monday 22nd June 2026 at 2:30 pm ]

Online Memorial & Donations: The family has set up a beautiful MuchLoved tribute page where you can find full details of the service, share your personal memories, upload photos, or light a virtual candle in his honour. You can visit his page here: https://ronald-edward-king.muchloved.com/

Supporting Each Other Through Grief

We know that Ron meant so much to so many of you, and his loss will be felt deeply across our community hubs. If you are struggling with this news or finding things difficult, please don't carry it alone:

Share a Memory: We encourage you to use Ron's MuchLoved page to share stories with one another; finding comfort in our shared memories is exactly what Ron would want.

Grief & Bereavement Support: For anyone needing dedicated space to process grief, we highly recommend reaching out to Cruse Bereavement Support (cruse.org.uk) or calling their free helpline at 0808 808 1677.

Immediate, 24/7 Emotional Support: If you need to talk to someone right now, day or night, Samaritans are always there to listen without judgment. You can call them for free from any phone on 116 123 or visit samaritans.org.

Ron, your legacy is woven permanently into the fabric of PIP-UK. We will keep making headway, we will keep improving things for everyone with Poland Syndrome, and we will never forget that there is no such word as can't. Rest in peace, dear friend.

New chapter alert! 📣 We are so excited to finally share a project we’ve been working on behind the scenes.For those who ...
27/05/2026

New chapter alert! 📣

We are so excited to finally share a project we’ve been working on behind the scenes.

For those who don't know me well, my name is Polinaand I am leading a new project for young people with Poland Syndrome. Living with Poland Syndrome (a rare condition that affects chest and limb development) has taught me so much about resilience, but it also taught me how lonely it can feel without a community.

This project is dedicated to empowering the next generation of youth to speak up, connect, share their stories, and advocate for rare condition awareness. We are building a space where young people don't just feel accepted, they feel empowered to lead.

How you can help right now:

🌍 Share this post to help us reach families and young people who need this community.
💬 Comment below with a message of support or tag someone who should see this.
🔗 Click the link in our bio to have a look at what we were up to before!

A massive thank you to players for making this project possible, your support is helping us empower the next generation of the Poland Syndrome community

We hope you're enjoying our Poland Syndrome Awareness Day 2026 podcast series so far - here's the third episode from our...
14/05/2026

We hope you're enjoying our Poland Syndrome Awareness Day 2026 podcast series so far - here's the third episode from our new series.

In this powerhouse episode, Giselle is joined by World Champion Powerlifter, Occupational Therapist, and mental health clinician, Keir Harding; a legend in the Poland Syndrome community, not just for his professional clinical expertise, but for his extraordinary physical achievements.

Keir dives deep into the "inner critic," explaining how he learned to silence the voice that told him his body was "disgusting" or "incomplete" and replaced it with the discipline required to reach the very top of the world stage.

From the world-championship platform to the vulnerability of the therapy room, Keir shares how he navigated shame and embarrassment to recognise his true value.

Keir’s message is a masterclass in resilience: your inner critic doesn't get a vote in what you are capable of achieving.

You can listen to the episode here: https://pip-uk.org/what-about-ps where you will also find all of our Podcast episodes

If this eipsode has inspired you to share your PS story, we'd love to hear from you - comment below or DM us and we'll be in touch

We're looking for new Trustees to help lead and continue to develop PIP UK in what are currently very challenging times ...
13/05/2026

We're looking for new Trustees to help lead and continue to develop PIP UK in what are currently very challenging times for the charity sector

The most important thing we are looking for in our Trustees are people who care about this community and who want to help us achieve our aims

It's an exciting time to join us as we look ahead to our 15th Birthday later this year

We would especially love to hear from you if you have experience of

🍎 Safeguarding

🍎 Communications

If you have previous Trustee experience and/or lived experience of Poland Syndrome this would be very welcome, but it's not essential

If you are able to offer your time and are interested in talking more please contact us at [email protected] and include your CV

Please share this post far and wide if you can

In the second of our Poland Syndrome Awareness Day 2026 Podcast Series, we meet Hale, an Istanbul native who is currentl...
08/05/2026

In the second of our Poland Syndrome Awareness Day 2026 Podcast Series, we meet Hale, an Istanbul native who is currently navigating a new life in Barcelona.

Hale only received her Poland Syndrome diagnosis six months ago, sparking a profound journey of self-reflection and healing. In conversation with Giselle she opens up about the years spent "being alone" with her condition and the life-changing impact of finally finding a community that understands.

Hale’s story is a testament to the fact that it is never too late to find your tribe or your self-love.

You can listen to the episode here: https://pip-uk.org/what-about-ps where you will also find all of our Podcast episodes

Would you like to share your PS story? Comment below or DM us and we'll be in touch

07/05/2026

Throw back to PS Day last Thursday and Carol's amazing bungee jump for our community.

Absolutely no hesitation or fear and over she went - Carol is one brave lady!

Thank you Carol, we're in awe of you 🙏

There's still time to donate in support of Carol's jump (link in comments) to help her reach her £500 target.

And only moments after last week's jump Carol was already thinking about what she can do next year! Do you have any ideas?

🌍 ONE WORLD. ONE COMMUNITY. ONE MISSION. 🌍PIP-UK is the global clinical and emotional bridge for Poland Syndrome. We pro...
30/04/2026

🌍 ONE WORLD. ONE COMMUNITY. ONE MISSION. 🌍

PIP-UK is the global clinical and emotional bridge for Poland Syndrome.

We provide 1:1 specialist advocacy and peer-led connection sessions to families in every time zone.

In doing this we don’t receive international government funding or UK government funding, meaning we rely on YOU.

If PIP-UK has been a community heartbeat for you or your family, please use this Awareness Day to ensure we can stay there for the next family, wherever they are in the world.

👉 DONATE GLOBALLY: http://bit.ly/4df3fyr

👉 THE UK CLINIC FUND: https://bit.ly/4tFTXCv

👉 BE COUNTED: https://bit.ly/4cCpC1t

Your donation has global impact

💚 £10 / $12: Powers our Monthly Community Zoom Connections, ensuring no one, regardless of their country, has to navigate Poland Syndrome alone.

💚 £50 / $60: Funds an In-Depth Advocacy Session. This provides one-to-one expert support for families facing critical moments: a new diagnosis, late-stage discovery, or complex surgery decisions.

💚 £100 / $125: Sponsors a Family at our Specialist Clinic. Your donation supports a family’s journey through the UK’s only multidisciplinary PS clinic.

Address

Stockport
SK38JE

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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