PIP - UK Poland Syndrome Support

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.

25/01/2026

✨ Community Connect ✨

We’re gathering for our first 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 💛

📅 Sun Jan 24th and every last Sunday in the month
💻 Online 7-8pm GMT
💬 Open, gentle, supportive

Book your place on the link in the Bio

24/01/2026

✨ Community Connect – tomorrow ✨

We’re gathering for our first 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 💛

📅 Tomorrow - Sun Jan 24th and every last Sunday in the month
💻 Online 7-8pm GMT
💬 Open, gentle, supportive

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

24/12/2025

✨As we come to the end of 2026, we want to say thank you.✨

This has been a challenging year for the charity sector, and PIP-UK has been working with very limited resources. And yet, through collective care, commitment, and shared purpose, we have continued to make real and meaningful impact together.

One of our most significant milestones this year has been the completion of our first ever piece of community-designed research into chest wall surgery.
Co-produced with people with lived experience, this research will be published next year and shared with surgeons and medical professionals, helping to shape understanding and care in ways that have not existed before.

Together, we have:
• Celebrated Poland Syndrome Day
• Supported five specialist clinics at Birmingham Children’s Hospital
• Come together in person over the summer and stayed connected through monthly online community events
• Offered one-to-one support, advice, and advocacy to individuals and families navigating referrals and care
• Continued to grow a dedicated volunteer team with lived experience
• Navigated trustee board changes, welcoming Rachel and Guy, and saying goodbye with thanks to Julie and Peter
• Been inspired by amazing fundraisers, including Aaron’s 100km run in October

All of this has been achieved with a small team and a strong reliance on volunteers, partnership, and goodwill, a testament to the strength of this community and what is possible when people come together with shared purpose.

🌱 As we look ahead to 2026, we do so with hope.
We’re excited to share the outcomes of our research in publications, continue supporting families through clinics and connection, and keep building an organisation shaped by the voices of the community it serves.

We will also continue to need your support - through donations, fundraising, volunteering, sharing our work, or simply staying connected. Every act of support helps ensure that PIP-UK can continue to be here for those who need us.

Thank you for being part of this community and for everything you bring to it.

With gratitude,
Sam Fillingham
CEO, PIP-UK

💤 We’ll be taking a short pause and will be back online from 5 January.

03/12/2025

Yesterday was Giving Tuesday. In all honesty, with everything we have going on holding space for clinics, research, and community support, we didn’t get a chance to run a fundraising campaign.

But the truth is: we really do need your support right now.

We are doing all we can to show up for families at the Poland Syndrome clinics, hold our connection events, offer 1–1 support, create resources, and build the research we’ve all waited so long for. None of this is funded by the NHS or statutory services. It’s powered entirely by people like you.

So today, gently, we’re asking.

If PIP-UK has helped you, your child, or your family…
If you believe in what we’re building together…
If you want our community to continue to grow, educate clinicians, and support the next family who reaches out feeling scared and alone…

Please consider making a donation today.
Whether it’s £3, £10, or something larger — it truly makes a difference.

https://checkout.justgiving.com/c/2865534

Thank you for being part of this community.
Thank you for showing up.
Thank you for helping us make sure no one faces Poland Syndrome alone.

With gratitude,
Sam x

Anything you can give will make a huge difference!

03/12/2025

Join us tonight on Wednesday 3rd Dec at 6pm GMT on Zoom as our Ambassador Dr. Kim Daybell shares the results of our first-ever community-led research into chest wall surgery that was produced with the fantastic work of researcher Janelle Kolas.

This ground-breaking project has been co-produced with our community throughout the year, shaped by your voices and lived experiences through focus groups and shared stories.

For years, you’ve asked for more research and information in this area - and together, we’ve made it happen. This is just the beginning of a new chapter in understanding Poland Syndrome and improving care for everyone affected. The research has not been published yet, we wanted to share it with you at the earliest opportunity and are working on a publication strategy.

We look forward to seeing you there. Don’t worry if you can’t make it tonight, we will record and upload to our you tube channel soon and are working on publishing the findings on our website.

Meet with Dr Kim Daybell about our research on chest surgery in Poland Syndrome

12/11/2025

🌟Save the Date!🌟

We’re thrilled to announce a very special upcoming event…

Join us on Wednesday 3rd Dec at 6pm GMT on Zoom as our Ambassador Dr. Kim Daybel shares the results of our first-ever community-led research into chest wall surgery that was produced with the fantastic work of researcher Janelle Kolas

This groundbreaking project has been co-produced with our community throughout the year, shaped by your voices and lived experiences through focus groups and shared stories.

For years, you’ve asked for more research and information in this area - and together, we’ve made it happen.

This is just the beginning of a new chapter in understanding Poland Syndrome and improving care for everyone affected.

🗓️ Save the date and sign up to attend here: https://tidycal.com/sampipuk/research-on-chest-surgery-in-poland-syndrome

04/11/2025

A lovely google alert to wake up to this morning.

Congratulations to Bernadette and Eden 💚❤️

https://www.shropshirestar.com/news/local-hubs/bridgnorth/2025/10/31/bridgnorth-sisters-celebrate-both-winning-honours-at-regional-gymnastics-competition/ #

Two young Bridgnorth sisters are celebrating after both taking home gymnastic prizes from a regional competition.

03/11/2025

Wow - what an incredible achievement! 🎉

Aaron was cheered home on Friday evening by lots of friends and family after completing his amazing challenge — 100 kilometres in 31 days, all while juggling work, family life, and the cold, dark, rainy October weather here in the UK!

His dedication and determination to reach both his running and fundraising goals has truly inspired us all.

Thanks to Aaron’s efforts, his fundraising total now stands at £1,715 (and still climbing!) - far surpassing his original goal of £500. 💙

This incredible amount will make a real difference - helping us provide 1:1 support for families at our children’s clinics, resources for parents facing diagnosis, and continue building our peer support community for those living with Poland Syndrome.

A huge thank you also goes to all the friends, family members, and local businesses who cheered Aaron on, donated, and shared his story - your kindness and support mean the world Aaron and to our small charity and the families we serve.

Thank you, Aaron — what a star! 🌟

31/10/2025

Tonight is Aarons last run to reach his 100k running target this October.

What an incredible month and an incredible achievement Aaron, so grateful.

If you are local Aaron will be finishing his final run at Leigh Sports Village around 6.45/7, why not go and cheer him home for his last moments of this challenge.

Thank you all for such incredible support.

https://www.justgiving.com/page/pip-uk-poland-syndrome-charity-aaron