BPAN Family Day 2026

For the first time in the UK, in collaboration with the NIHR, GOSH and the BRC we brought together families affected by BPAN to hear the latest updates on all things research and charity. Around 140 people, mainly from across the UK, but also with families joining us from Greece, Spain, Italy, USA and Latvia, others dialling in from Australia, Ukraine and Mexico.

The feedback from families has been overwhelmingly positive. Feeling supported, connected and understood, and for the first time, truly part of something that is making a difference. Many are already asking how they can get involved and that says everything!

One of the most important parts of the day was bringing the research to families. Hearing directly from the teams at Great Ormond Street Hospital and University College London, learning about the latest progress in gene therapy and cardiac glycosides, and having the chance to ask the questions that really matter.

The researchers themselves left feeling more motivated than ever. Meeting so many incredible children and families had a real impact, reminding them exactly why this work matters and strengthening their drive to push the science forward even harder.

When we met these incredible researchers, for the first time we felt real hope. That’s what we wanted to bring to as many families as we could, the knowledge that this is a very real opportunity to get behind and support.

The commitment, the expertise, the belief… it’s all there. The reality is, this comes down to funding that can unlock life-changing treatments and real improvements in quality of life for people living with BPAN.

This day was nearly a year in the making, and it simply wouldn’t have happened without the incredible support behind the scenes, from Great Ormond Street Hospital and Charity, UCL, NIHR Biomedical Research Centre and The National Lottery Community Fund, to the researchers, volunteers, our BPAN Unites charities, BPAN Heroes and BPAN Matters and every single family who joined us, in person or online.

An extra special thank you to our family presenters Lindsey Knight & Laura for being so brave and vulnerable in sharing their lived experiences with their children

Thank you for showing what’s possible when we come together like this.

Because alongside the science, something else has now been built.

A community that supports each other.

A community that understands.

A community that knows we are not alone.

Stronger together, always. 🩷💙