By Sam Fillingham | CEO
From Connection to Change – Your Support is Powering a Brighter Future for the Poland Syndrome Community
Since our last update in December, something truly beautiful has unfolded in the global Poland Syndrome (PS) community—thanks to your continued belief in our mission.
Earlier this year, we hosted PS FEST Online, our largest virtual gathering to date. Over 50 members from across the world joined us for a weekend of support, inspiration, and togetherness. Parents, young people, and adults living with PS came together for live podcast recordings, wellbeing sessions, and expert-led talks. The weekend was rich with moments of recognition and reflection—many people met someone with Poland Syndrome for the very first time in their lives and new parents found a place to share their questions and concerns.
This kind of connection is powerful. And it’s only possible because of you.
Our online spaces and childrens clinic days have offered vital moments of connection. One participant told us their favourite part was simply “meeting other people with PS”. Another family reflected on the joy of “meeting and talking to members of the PS community and/or their parents”, a testament to how important it is to carve out these spaces—online and offline—where people feel seen and supported. These connections may appear small, but for families who often feel isolated, they’re life-changing. And it’s your support that continues to make these healing interactions possible.
Inspired by the momentum of the Poland Syndrome Global Register—which you’ve helped build—we’ve launched the next phase of our work: research that reflects our lived experience of surgery for Poland Syndrome. Over the past few months, we’ve held three focus groups exploring surgical outcomes for people with Poland Syndrome. These conversations are the foundation of something groundbreaking: a report co-created with our community, rooted in real stories, that we hope to publish later this year. Building on the foundations of the Global Poland Syndrome Register, our current research into surgical outcomes is helping us gather evidence that will inform surgeons, medical professionals, and decision-makers in ways never previously possible. It’s a groundbreaking step toward improving care and shaping a better future for everyone living with Poland Syndrome.
We’re thrilled to share that the number of active global participants in the register has now grown to 390. Each person represents a story, a voice, and a vital contribution to better understanding this rare condition on a global scale.
We’re also expanding the support we offer. In response to what we heard at PS FEST, we’re planning monthly online support sessions and new projects focused on children’s wellbeing. It’s clear that the community wants more than just information—they want connection, healing, and hope.
In the background, we’re working to strengthen our volunteer base and operations to ensure that this work can grow sustainably. Every time you share, donate, or cheer us on, you’re helping to make that growth possible.
This year, we also launched a new downloadable resource, “Start Here: Poland Syndrome and Me”—a compassionate, easy-to-understand guide designed to support newly diagnosed families and individuals navigating their Poland Syndrome journey. It’s already proving to be an empowering tool, helping people feel less alone, more informed, and better equipped to advocate for themselves and their children.
We couldn’t do this without you. Thank you for believing in a better future for everyone affected by Poland Syndrome.
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