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

🌍We’re Back! Poland Syndrome Community Connect Sessions – Monthly Online Meetups, Starts tomorrow 🌍After the beautiful c...
28/06/2025

🌍We’re Back! Poland Syndrome Community Connect Sessions – Monthly Online Meetups, Starts tomorrow 🌍

After the beautiful connections made during PS Fest, we’re so excited to bring back our Online Community Connect Sessions – now happening monthly! 🎉

🗓️ Upcoming dates (7–8 PM UK time):

- Sun 29 June
- Sun 27 July
- Sun 28 September
- Sun 26 October
- Sun 30 November

These relaxed, welcoming Zoom sessions are for anyone impacted by Poland Syndrome, no matter where you are in the world. Come to share, listen, ask questions – or just be in the company of others who truly get it.

đź”— Booking link here: https://tidycal.com/sampipuk/pip-uk-community-connect

Zoom details will be sent after you book!

Tag a friend, spread the word, and mark your calendars 🗓️

Let’s keep the global PS family connected

PiP UK Visit to Newman University Foundation Year ProjectsSupporting Awareness and Understanding of Poland SyndromeIt wa...
19/06/2025

PiP UK Visit to Newman University Foundation Year Projects
Supporting Awareness and Understanding of Poland Syndrome

It was an honour for PiP UK to be invited to Newman University to witness the incredible efforts of the Foundation Year students, who have dedicated their time and creativity to raising awareness of Poland Syndrome through a diverse range of academic and practical projects.

Over several months, Paul Preston, Chairperson of PiP UK, alongside Rachel Preston, had the privilege of visiting the university and engaging with students as their work progressed. The enthusiasm, compassion, and commitment shown by the students have been truly inspiring.

The projects showcased included:

Website designs tailored to inform and support those affected by Poland Syndrome
Legal research papers exploring disability rights and protections in relation to rare conditions
Health, fitness, and wellbeing guides aimed at supporting those living with limb difference
Awareness campaigns designed to educate the public and reduce stigma
The display of interdisciplinary work not only highlighted the students’ academic talents but also their ability to approach complex health topics with empathy and social awareness. Their contributions represent a significant step forward in amplifying the voices of those affected by Poland Syndrome.

We at PiP UK are deeply grateful to
Newman University for integrating this meaningful cause into their curriculum. The collaboration has created lasting impact, and we look forward to sharing the final results of the students’ efforts very soon.

Thank you to all the students and staff involved for your dedication and for helping to create a more informed, inclusive world.

– PiP UK Team

🌍We’re Back! Poland Syndrome Community Connect Sessions – Monthly Online Meetups 🌍After the beautiful connections made d...
06/06/2025

🌍We’re Back! Poland Syndrome Community Connect Sessions – Monthly Online Meetups 🌍

After the beautiful connections made during PS Fest, we’re so excited to bring back our Online Community Connect Sessions – now happening monthly! 🎉

🗓️ Upcoming dates (7–8 PM UK time):

- Sun 29 June
- Sun 27 July
- Sun 28 September
- Sun 26 October
- Sun 30 November

These relaxed, welcoming Zoom sessions are for anyone impacted by Poland Syndrome, no matter where you are in the world. Come to share, listen, ask questions – or just be in the company of others who truly get it.

đź”— Booking link here: https://tidycal.com/sampipuk/pip-uk-community-connect

Zoom details will be sent after you book!

Tag a friend, spread the word, and mark your calendars 🗓️

Let’s keep the global PS family connected

Poland Syndrome children’s clinic at today.Just Sam there today, be sure to say hello and find out what resources we ca...
16/05/2025

Poland Syndrome children’s clinic at today.

Just Sam there today, be sure to say hello and find out what resources we can share with you in our Poland Syndrome community. We need more volunteers to help support our clinics by being there for families in the waiting room, sharing experiences and resources to help. Get in touch if you can help.
We still don’t have funding for this clinic and the Drs are still kindly donating there nhs time so wait times are still long for this. Grateful we have this as the only Poland syndrome clinic in the UK.

What a Day! Poland Syndrome Awareness Day 2025Today has been incredible — from Richard Stott’s inspiring video, to heart...
30/04/2025

What a Day! Poland Syndrome Awareness Day 2025

Today has been incredible — from Richard Stott’s inspiring video, to heartfelt stories like Elijah and Bernadette’s, to our brand-new Start Here – Poland Syndrome and You resource.

We’ve felt the love, the shares, the comments, and the connections. THANK YOU for being part of it. Every like, share, and conversation helps more people understand what it means to live with Poland Syndrome.

Now, as we close out this special day, we’re asking one more thing:
**Will you help us keep going?**

✨ Your donation means we can:
- Continue groundbreaking research 👨‍🔬
- Support families like Elijah’s 👨‍👩‍👧‍👦
- Reach the undiagnosed and misdiagnosed đź’¬
- Create more resources and events just like today đź“š

đź’™ If this day moved you, please donate what you can:
https://pip-uk.org/donate
Every penny makes a difference.

Let’s keep the momentum going. Let’s keep showing up. Together. 💪

Highlight of Today is hearing from Elijah and his mum Bernadette, the family came to our first ever family day in 2019 a...
30/04/2025

Highlight of Today is hearing from Elijah and his mum Bernadette, the family came to our first ever family day in 2019 and have been a big part of our community since. Elijah is on of our young ambassadors too.

💬 "I wish I knew I had a simian crease on my little hand like monkeys and apes – it’s so cool! It means I can swing like a monkey at parkour!" – Elijah, age 9½

Elijah has Poland Syndrome, with his left side affected. His mum Bernadette shares how their journey began:

🧡 "We started talking to him about his difference around age 2, when he asked why one hand was different. We told him he was extra special and super rare – born with something amazing called Poland Syndrome. We said mummy has boring blonde hair and blue eyes, daddy has brown – but he has something superhero-level cool!"

đź’« They kept it simple:
- You were born this way (fact)
- Everyone is different (fact)
- It’s rare (fact)
- And you can still do amazing things (fact!)

Bernadette adds:
“It’s been amazing watching his confidence soar. He used to say Baby Shark bit his hand – now he proudly tells people all about PS. Meeting others has been so empowering.”

🌟 Her advice to other parents:
- Talk early and often
- Don’t hide differences – celebrate them
- Take photos, handprints, keepsakes
- And remember: **you’re not alone**

Thank you so much for sharing so beautifully today Elijah and Bernadette, it really makes a difference.

🚨 We Need Your Voice! Join Our Poland Syndrome Research Focus Groups🚨A huge THANK YOU to everyone who’s already taken pa...
30/04/2025

🚨 We Need Your Voice! Join Our Poland Syndrome Research Focus Groups🚨

A huge THANK YOU to everyone who’s already taken part — we've completed three insightful sessions so far, and now we’re looking for more amazing people to help shape the future of care and understanding around Poland Syndrome 💬

This is a groundbreaking study led by our ambassador Kim Daybell, in collaboration with Newman University and PIP-UK. Your real-life experiences could make a huge difference in how PS is understood and treated.

🔍 We're currently looking for:
- 👨 Males who’ve had chest wall surgery
- đź’¬ Anyone (male or female) who was offered chest surgery but chose not to go ahead
- đź‘Ş Parents of children (now 16+) with Poland Syndrome

🧠 The research includes a quick survey and an informal Zoom focus group chat — nothing too formal, just an opportunity to share your story in a safe space and be heard.

💡This is one of the most important research initiatives we’ve had in years — and it won’t be complete without you.

👉 Sign up here: [https://forms.office.com/e/UHMqEHbfVN](https://forms.office.com/e/UHMqEHbfVN)
📌 You’ll find everything you need: consent forms, the participant info sheet, and a brief history survey.

Let’s push this research forward together 🙌
Please share with anyone who fits the criteria!

📌 New Resource Alert!🧡Start Here – Poland Syndrome and You💚 Whether you’ve just received a diagnosis, have been living ...
30/04/2025

đź“Ś New Resource Alert!

🧡Start Here – Poland Syndrome and You💚

Whether you’ve just received a diagnosis, have been living with Poland Syndrome for years, or are simply looking to connect with others who understand — this guide is for you.

We’ve pulled together everything in one place:
âś… How to get a diagnosis
âś… Ways to connect
âś… Mental health resources
âś… Trusted info about treatment and lived experiences
âś… Community voices, podcasts, and more

This help sheet is designed to offer guidance, reassurance, and a reminder that you’re not alone.

đź“Ą Download it here: https://pip-uk.org/start-here-poland-syndrome-you

📲 Share with anyone who might find it useful — the more people it reaches, the stronger our community becomes.

❤Let’s talk… YOU and Poland Syndrome💚 Whether you were diagnosed as a child, just found out recently, or have always kno...
30/04/2025

❤Let’s talk… YOU and Poland Syndrome💚

Whether you were diagnosed as a child, just found out recently, or have always known but never talked about it much — your story matters. And it could be the exact thing someone else needs to hear today.

đź’¬ Tell us in the comments:

- What’s one thing you wish you’d known earlier?
- What helps you feel more confident or understood?
- What would you say to someone newly diagnosed?

✨ We’ve just launched our new resource: “Start Here – Poland Syndrome and You” — a guide packed with information, support, and ways to connect. Whether you’re looking for answers or community, it’s here to help.

đź“Ą Grab it here: https://pip-uk.org/start-here-poland-syndrome-you
👇 And don’t forget to tag someone who needs to see this today.

Let’s build a thread of real voices, shared wisdom, and hope.
Because no one should feel alone with PS. ❤💚

What happens when you meet someone with your rare condition for the first time at age 24? Karen and Gift share their emo...
30/04/2025

What happens when you meet someone with your rare condition for the first time at age 24? Karen and Gift share their emotional stories of finding belonging through PIP-UK.

Their message: "You are seen, you are heard, you are not alone."

This past weekend for PS Fest 2025 we recorded a live podcast with Caron & Gift and we were joined by the community and we shared some special time together after the recording finished. It was a truly special event.

Karen and Gift's powerful stories of living with Poland Syndrome will leave you moved and inspired. From opposite corners of the world - Devon, England and Uganda - these two remarkable women share their journeys through isolation, self-doubt, and ultimately toward acceptance and community.

You can listen on all your favourite podcast platforms or head to the player on our website here: https://pip-uk.org/what-about-ps

30/04/2025

🧡 It’s Poland Syndrome Awareness Day 💚

And who better to help us mark it than comedian and PIP-UK ambassador

In this video, Richard shares how Poland Syndrome has shaped his body—and his story. He talks honestly about disability, confidence, not being asked (so not telling), and how opening up brought him closer to the people who matter most.

💬 “I wouldn’t be the person I am today without it… I wouldn’t change it for the world.”

Whether you were diagnosed at birth or just starting to explore your connection to Poland Syndrome, this message is for you.
You are not alone. You are part of a growing, loving, and powerful community.

🎥 Watch and share
🌍 Learn more at pip-uk.org
📢 Tag someone who needs to see this today

🌟 A Heartfelt Merci to the French Poland Syndrome Association! 💙We are overjoyed and deeply grateful to the French Polan...
13/12/2024

🌟 A Heartfelt Merci to the French Poland Syndrome Association! 💙

We are overjoyed and deeply grateful to the French Poland Syndrome Association and all their supportors for their incredible donation of €10,000 to PIP-UK! 🎉 Particular thanks to Nadine Davagnar and Corinne Barrao from the association for making this possible and for all your support.

This generous support will go a long way in helping us continue our mission to improve diagnosis, treatment, and wellbeing for those living with Poland Syndrome. Its particularly difficult year for fundraising as a small charity. Your contribution is more than a donation - it’s a beacon of hope, unity, and progress for our community.

Together, we are breaking barriers, raising awareness, and creating a brighter future for those affected by this rare condition. Thank you for standing with us and believing in our vision. 🌍✨

Let’s celebrate this international collaboration and the amazing impact we can achieve together! 💙

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Ashton-Under-Lyne

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

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