PIP - UK Poland Syndrome Support

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

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

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

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?

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.

30/04/2026

Thank you so much for all the love, awareness and money raised today.

It means the world to our community.

A video from our friends at RareQoL to end an amazing Poland Syndrome awareness day 2026.

Video made with Biteable. The World's Simplest Video Maker

30/04/2026

This Poland Syndrome Awareness Day 2026 we are launching new episodes of our Podcast - What about PS?

Our first episode features the wonderful Baker Family who refused to let Poland Syndrome define their son. Through this episode we are proving that the PS community has no borders as our host Giselle (entrepreneur, athlete, PIP-UK Ambassador, and PS advocate calling in from South Africa) connects with the Baker Family in New Jersey, USA.

What follows is a beautiful conversation about the universal experiences of raising a child with Poland Syndrome. From the initial diagnosis in America to the confidence found on the sports field, and the entrepreneurial spirit driving advocacy in Africa, this episode is for every family, everywhere, who has ever felt alone in their journey.

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

Pop back here once you've listened and let us know your thoughts - we'd love to hear from you

27/04/2026

We've been busy behind the scenes recording new episodes for our 'What about PS?' podcast series.

Our first new episode will be available on Thursday (30th April) to tie in with this year's Poland Syndrome Awareness Day (details to follow).

Huge thanks to our wonderful host Giselle Barbosa for her time and efforts in bringing these stories from our community together.

And thank you to our guests for being so open and willing to share your stories.

We can't wait to share them 💚