The power of shared lived experience cannot be overstated, particularly in the RARE world, as Sinead James, founder of CPA Research Foundation, highlights in her review of the foundation’s first in-person retreat 

Written by Sinead James, founder and trustee, CPA Research Foundation

31st May 2025 marked a historic milestone for the CPA Research Foundation, as we hosted our very first in-person overnight retreat in the heart of London. This was not just a foundation event—it was a truly life-changing experience for the four individuals living with cerebral proliferative angiopathy (CPA) who attended alongside their families.

For the first time ever, these individuals were able to meet others who share the same ultra-rare diagnosis—an extraordinary moment of connection and understanding that cannot be overstated. In a condition as rare as CPA, most patients will go a lifetime without meeting another person with the same diagnosis. Witnessing these families come together to share their stories, challenges and hopes was deeply moving and inspiring.

We were honoured to welcome Mr Greg James, consultant neurosurgeon at Great Ormond Street Hospital and a longstanding supporter of our work. Greg delivered a fascinating and accessible talk—“CPA: What’s in a Name?”—which shed light on the complex nature of CPA and its distinction from other vascular brain conditions, such as arteriovenous malformations (AVMs).

Importantly, Greg shared exciting developments from our emerging international collaborations with expert centres in Boston and Toronto. These partnerships will enable the collection of valuable patient data across regions—an essential step in formally defining CPA as a distinct condition and driving better recognition, treatment pathways and support.

The retreat also featured an engaging and thoughtful session led by Dr Sumira Riaz, founder of Unboxed Psychology. With her expertise in supporting people living with rare and chronic illnesses, Sumira guided families through interactive workshops on mapping the patient journey and managing the emotional impact of rare disease life. From anxiety management to resilience building, her practical advice resonated deeply with everyone present.

Of course, the weekend was about much more than formal sessions. Between the workshops and presentations, there were powerful moments of camaraderie, laughter and shared experience. Families talked openly about their personal journeys, exchanged ideas for future fundraising and awareness efforts, and began laying the groundwork for a growing CPA community network.

The retreat closed with a warm and joyful shared meal—marking not the end, but the beginning of something truly special for the CPA community.

For those living with CPA, this was more than a meeting. It was a chance to feel seen, heard and connected in a way that only those with lived experience of this ultra-rare diagnosis can fully understand.

We are proud to have created this safe and empowering space—and this is only the start. With new partnerships, expanding research efforts and a stronger community voice, the future for CPA has never looked brighter.

Here’s to many more gatherings, deeper understanding and lasting change.

To find out more about CPA Research Foundation, visit www.cparfoundation.org

The CPA Research Foundation is the only organisation in the world dedicated to supporting individuals and families affected by cerebral proliferative angiopathy (CPA), an ultra-rare and under-researched vascular brain condition, through awareness-raising, community building and pioneering research initiatives.

---