We're excited to be attending RARESummit 2026 this October, where we'll be exhibiting, meeting new and familiar faces, and running a creative workshop alongside Carina Thurgood, founder of The Maddi Foundation.
As we started planning our session, we spent time talking with Carina about her experiences of rare disease research and the many conversations she's had with families, advocates and researchers over the years. At one point, while we were discussing some of the challenges that people often encounter along the way, Carina said:
"Yes... if only."
Those two words stayed with us.
The more we thought about them, the more they seemed to capture something important about the rare disease research landscape.
Rare disease research is unique. Some of the biggest advances happen because patients, parents, charities and advocates refuse to give up. They bring people together, raise funds, create momentum, build communities and help drive new ideas forward.
Yet despite this, research is not always centred around the people it is ultimately trying to help. Equally, researchers themselves are often working hard to improve outcomes for patients while facing their own frustrations and barriers along the way.
Everyone wants progress. Everyone wants research to make a difference. And yet there are often things that get in the way.
That is the thinking behind our workshop.
We want to bring together patients, families, advocates, charities, researchers and others involved in rare disease research to explore those barriers, frustrations, wishes and possibilities together. The session won't necessarily reveal all the solutions. Instead, it's about creating space for honest reflection and conversation about what could make rare disease research work better for everyone involved.
Through simple creative activities, we'll invite people to share not only their thoughts, but also some of the stories, emotions and experiences behind them. Together, we'll build a visual picture of what's missing from the rare disease research experience and what's needed to make it more accessible, understandable and responsive to the community it serves.
If you're attending RARESummit, we'd love to meet you. Please do stop by our stand, join the workshop (15:35–16:25; Session C), or simply come and say hello.
We're excited to see where the conversation leads.
Phil and Liz
PhiZ & Co.