Global Poland Syndrome Community Register Project

Connection, Courage, and Community: Our Latest Update from PIP-UK

Over the past few months, we’ve been quietly working behind the scenes on something truly transformative for our Poland Syndrome community. Our first-ever surgical outcomes research project is now nearing completion, with the draft results due to be shared with our Steering Committee later this month. This marks a huge milestone for PIP-UK, the first time data has ever been gathered directly from our community in this way to help inform surgeons, researchers, and medical professionals about Poland Syndrome in a way that has never been done before. We can’t wait to share the outcomes in our next report.

While the research team has been analysing data, our family support work has continued in full force. We’ve been present at the Poland Syndrome clinic, providing one-to-one emotional and logistical support for families — from helping them prepare for appointments to being there on the day and checking in afterwards. Alongside this, our monthly online connection events have continued to offer a safe space for members to share, learn, and rest together — strengthening the sense of belonging that makes this community so special.

We’re also thrilled to share that five new volunteers have joined our growing team, all with lived experience of Poland Syndrome. Their energy and compassion are helping us reach more families and create stronger community networks. This spirit of collective care is mirrored in the wider community too — with one incredible dad currently running 100 kilometres this month to raise funds and awareness for PIP-UK. His dedication reflects the heart of this project: families supporting families, creating hope one step at a time.

“For many families, attending the clinic or joining one of our online connection events is the first time they’ve met anyone else with Poland Syndrome. It’s such a relief to know we’re not alone and to speak to others who truly understand,” shared one parent after a recent clinic.

One of our new volunteers added, “I wanted to give something back after seeing the difference PIP-UK made for my own family. It feels amazing to be part of something that’s helping others find the support we once needed ourselves.”

Thanks to your continued support, this project is not just about research — it’s about connection, empowerment, and changing the story of Poland Syndrome for generations to come.

Links:

• Aarons Fundraiser