PIP - UK Poland Syndrome Support

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 💚

26/04/2026

✨ Community Connect – Tonight ✨

We’re gathering for our monthly Community Connect and you’re so welcome to join us.

This is a relaxed, friendly online space for people affected by Poland Syndrome to connect, share, listen, and simply be together. No pressure to talk. No agenda to perform. Just community.

If you’ve been meaning to connect but haven’t known where to start, this is for you 💛

📅 Tonight - Sun 26th Apriland every last Sunday in the month
💻 Online 7-8pm BST
💬 Open, gentle, supportive

Book your place here: https://tidycal.com/sampipuk/pip-uk-community-connec

22/04/2026

"I finally have a name for it."

Those were the words that changed everything for me and my son, Jack. When Jack was born, I had no clue what Poland Syndrome was. For three years, we were left guessing, wondering, and searching for answers that didn't seem to exist. It wasn’t until he was three years old that we finally received a diagnosis.

Having a name, Poland Syndrome, allowed me to stop guessing and start learning. It gave us a path forward. This charity, PIP-UK, is the reason families like mine don’t have to stay in the dark. They provide the bridge that helps parents understand their child's condition and ensures they aren't alone in the process.

Why I’m Jumping

To celebrate Poland Syndrome Awareness Day, I am throwing myself off a ledge (literally!) to raise money for PIP-UK. I want to highlight this condition so that other parents don't have to wait years for a name.

Every penny raised goes directly to the PIP-UK Clinic Campaign. These clinics are the only place in the UK where children can get a specialist multidisciplinary diagnosis for Poland Syndrome, a service that is currently unavailable elsewhere in the NHS.

Where Your Money Goes

By donating to my bungee jump, you are helping to fund:

Supporting families on the 12-month+ waiting list who are currently in the "guessing" stage I was in for three years.

Providing the 1:1 support that helps parents navigate GP referrals and medical uncertainty.

Ensuring children like Jack meet others just like them, reducing isolation and building confidence from an early age.

Please help me reach my goal and ensure that every child with Poland Syndrome gets a name, a diagnosis, and a community early in their journey.

Carol's jump is now only 8 days away - please share the link in our Bio to fundraising page if you can as all donations will make a big difference to us as a charity. Thank you 💚

22/04/2026

Carol's jump is now only 8 days away - please share the link to her fundraising if you can as all donations will make a big difference to us as a charity. Thank you 💚

Help PIP-UK Poland Syndrome Charity raise money to support PIP-UK Poland Syndrome Charity

10/04/2026

Lorca Jane Yerney is taking the plunge for Poland Syndrome Awareness Day on 30 April!

Help PIP-UK Poland Syndrome Charity raise money to support PIP-UK Poland Syndrome Charity

10/04/2026

***Posted on behalf of Vini Montalvan***

Hello everyone 👋🏼

As we prepare for Poland Syndrome Awareness Day on 30th April, we’re planning a series of posts highlighting products, tools, and adaptations that make everyday life easier for people affected by Poland Syndrome. I believe this is especially true for products that maybe are not even targeted for our community but you find them helpful.

These could be things like:
• Gloves for limb difference
• Adaptive clothing
• Tools or gadgets that help with daily tasks • Exercise or physio equipment • Prosthetics or supportive devices • Anything else that has genuinely

We’d love to hear from you.

If there’s a product that has made a difference in your day-to-day life, please feel free to reach out.

Our goal is to feature real experiences from our community, helping others discover things that might make their lives easier too. We may also reach out to some companies to see if they’d be willing to support the community with discount codes or awareness support.

Your experiences could help someone else find something that truly improves their daily life.

Thank you for helping us support the Poland syndrome community.

25/02/2026

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

So we'd love to hear from you if you have experience in

🍎 Fundraising

🍎 Bid/grant writing

🍎 Organisational level coordination skills

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

Most of all we want people who care about this community and want to support us to achieve our aims

If you are interested in talking more please contact us at admin@pip-uk.org and include your CV

19/02/2026

We’re recording new episodes of our podcast and are looking for guests who would like to share their experiences

Would you, or someone you know, be willing to talk about:

🎧 The first time you noticed your body was different / childhood awareness / delayed diagnosis / confusion / the emotional impact of finally putting a name to something you’ve always felt.

🎧 Growing up different / school years and adolescence / sport / changing rooms / how Poland Syndrome shaped confidence growing up – the moments that hurt, and the ones that quietly built resilience.

🎧 Chest and pectoral-affected Poland Syndrome / asymmetry, body image, clothing, mirrors / how people learn to exist in their bodies day to day

If so, we’d love to hear from you – comment below or DM us and we’ll be in touch

Please share this post or tag anyone who may be interested

19/02/2026

We’re recording new episodes of our podcast and are looking for guests who would like to share their experiences

Would you, or someone you know, be willing to talk about:

🎧 The first time you noticed your body was different / childhood awareness / delayed diagnosis / confusion / the emotional impact of finally putting a name to something you’ve always felt.

🎧 Growing up different / school years and adolescence / sport / changing rooms / how Poland Syndrome shaped confidence growing up – the moments that hurt, and the ones that quietly built resilience.

🎧 Chest and pectoral-affected Poland Syndrome / asymmetry, body image, clothing, mirrors / how people learn to exist in their bodies day to day

If so, we’d love to hear from you – comment below or DM us and we’ll be in touch

Please share this post or tag anyone who may be interested.