Dr. Apostolos Papandreou joins the Action for BPAN team as a Medical and Research Advisor and founding member of our growing Medical...

We thrilled to announce first ever UK BPAN Family Day is open for registration! We invite you to join us in London for a dedicated in-person event bringing families and researchers together to exchange knowledge, build connections, and help shape the future of BPAN research. Organised in partnership with Great Ormond Street Hospital, the NIHR Biomedical Research Centre (BRC), and UCL. This day is about listening to families, strengthening understanding, and ensuring patient v

Today, 28th January 2026 we were invited the BRC/NIHR GOSH Gene Therapy in Paediatrics event to represent our small but determined community. The day focused on bringing together GPs, paediatricians, clinicians and patient advocacy groups to provide an understanding of gene therapy technologies, long term effects, latest advancements & the future of gene therapy.  For us, the most impactful part of the day was hearing from the patients and their families who’ve received gene

Join us at the Brands Hatch inflatable 5K or find one of the 26 locations near you !

What an unforgettable Action for BPAN Golf Day 2025 at Burhill Golf Club ! A massive thank you to our sponsors Nozomi Networks , Hedin...

✨ What a day to remember! ✨ On Saturday 21st of June, 43 incredible people came together to climb Mount Snowdon  in support of Action for...

Bella Sniffing Out Golf Balls To Change Lives ⛳️ It Been A Busy Few Months But We Have To Take A Moment To Celebrate Some Of Our...

Join us for our first official fundraiser to climb up Snowdon to support BPAN research! Help raise awareness and funds for this rare...

Nicole Harper and I are absolutely thrilled to announce the official launch of our charity  Action for BPAN . This is such an exciting...

Welcome to the world of BPAN, a rare neurodegenerative disorder that affects individuals worldwide. Today, we delve into BPAN and shed...