Reflections on the Medics for Rare Disease Annual Strategy Meeting
Coming Together to Shape the Future of Rare Disease Care
I recently became a Trustee for Medics for rare Disease and on 13 and 14 June 2025 the Medics for Rare Disease staff team and board of trustees gathered in person for our annual Strategy Meeting. Hosted at Edgbaston Park Hotel, Birmingham. Two days were filled with open conversations, collaborative spirit, and a shared commitment to advancing our mission: to shape a medical profession that can provide people living with rare diseases with timely diagnoses and excellent care.
Welcoming New Faces and Valuing Experience
I was delighted to be among one of the new Trustees attending the meeting with Emma Macleod , Harriet Gordon-Brown, and Russell Hearn—who join longstanding rare disease champions Dan Jeffries and Chris France. The organisation has come such a long way since its inception, so it was exciting to be at this meeting to learn where the organisation was and discuss where are we headed. Our two days together revealed diverse expertise and enthusiasm that will strengthen our board and support effective leadership going forward.
Reflecting on Progress and Planning for Impact
Throughout the weekend, we reviewed the charity’s extensive work to date and brainstormed strategies to amplify our impact. Our discussions looked at how we can build on our achievements—such as the Rare Disease 101 training course, which educates hundreds of medics annually, and our Rare Disease Day campaign, which is raising awareness amongst medical students, doctors, and GP surgeries. There were some interesting ideas and approaches proposed, and it allowed us to explore what was feasible and achievable.
As a new Trustee, I would like to shout out the incredible staff team—Lucy McKay, Emma Huskinson, Helen Maginnis, Jo McPherson, Paula Reynolds, and Eleanor Churchill—who showed us that even though the team is small, their ambition is big, and their delivery is huge. Their dedication and passion are what make our charity mighty, and it was inspiring to gain insight into their individual ambitions for the future, as well as to reflect together on where we can grow and improve. Spending these two days with such a lovely, insightful group was a genuine pleasure and left me energised for the work ahead.
One of the standout facts we shared: while each rare disease is uncommon individually, they are collectively common, affecting over 3.5 million people in the UK alone. This underscores just how vital our advocacy and training efforts are, both at home and globally.
Looking Ahead: Global Impact and Next Steps
Our commitment goes beyond borders. As active members of the Lancet’s Global Commission on Rare Disease, our charity is contributing to the creation of a Global Rare Disease Action Plan. The potential to raise awareness and improve care is immense, and I am genuinely excited to see what the next 12 months will bring.
A Final Reflection
This weekend was my first in-person board meeting since joining as a trustee earlier this year, and it was truly stimulating. Getting to know both the staff and fellow trustees in person, and sharing ideas about the future, reaffirmed the power of a small, committed team. The good work already underway is inspiring, and there is so much potential to improve the experience of people living with rare diseases in the UK and beyond.
If you want to learn more or get involved, keep an eye out for our upcoming events and campaigns. Together, we can make the medical profession more “Rare Aware”—and life better for millions.
