Progress, Partnership, and Possibility – Highlights from RAREsummit25
Cambridge Rare Disease Network marks 10 years of collaboration at RAREsummit25.
The Cambridge Rare Disease Network (CamRARE) celebrated its 10th anniversary in inspiring style, as 250 delegates gathered on 6 November at the Wellcome Genome Campus for RAREsummit25, marking a decade of progress, partnership, and purpose in the rare disease community.
The event brought together people from across the rare disease ecosystem — patients, families, researchers, clinicians, industry leaders, policy-makers, and advocates — to explore the future of research, care, and innovation. Across keynotes, breakout sessions, and panel discussions, one message echoed throughout the day: real progress happens when partnerships endure.
Reflecting on the milestone, Emma Green, CamRARE’s Chair of Trustees, emphasised the importance of these shared spaces:
“It’s really important to bring the rare community together in places such as the Rare Summit to give everyone an opportunity to voice their challenges, their concerns, their needs in this space. It’s all about the connections — families looking for treatments or diagnoses for their children who can meet researchers working on such things. But they also get to meet other families, other individuals who are going through the same journey.”
It’s all about the connections — families looking for treatments or diagnoses for their children who can meet researchers working on such things. But they also get to meet other families, other individuals who are going through the same journey.
That sense of connection — of finding community within the complexity of rare disease — ran through every conversation. For Stacey McGeown, a parent and researcher from Queen’s University Belfast, the summit offered both knowledge and hope:
“The reason I’m here today is because I am a mom of a child that has an extremely rare bleeding disorder. Whenever you have a child that has a rare disease, you feel a lot of isolation and loneliness. So, we’re here to learn and connect. It’s been inspiring to see that so many of the speakers started as passionate parents — it gives us hope that we can progress as well.”
A Decade of Impact
The summit’s opening session, Ten Rare Moments and Legacy in Action, celebrated CamRARE’s achievements over the past decade — from shaping policy and co-designing research to building communities that empower people with lived experience. The charity’s initiatives, including the Rare Disease Research Network (RDRN) and the Rare Patient Passport, have helped transform how research and healthcare systems listen to and involve patients.
Mental Health and Wellbeing
A major theme woven through the day was mental health — a critical yet often overlooked part of the rare disease experience. Lauren Roberts from the charity RareMinds captured this perfectly:
“Discussing mental health here at the RAREsummit is a really vital part of everything that’s been discussed today. Whether the session is about mental health specifically or about self-advocacy and diagnosis struggles, we know this always has a mental health impact. I loved the wellbeing panel — they showed that the support people need isn’t rocket science. Often quite small things could make a really big difference.”
I loved the wellbeing panel — they showed that the support people need isn’t rocket science. Often, quite small things could make a really big difference.
Human Rights, Advocacy and Innovation
Breakout workshops allowed participants to dive deep into topics such as human rights, youth engagement, and innovation. Max Fisher, a rare patient and scientist at Vianatus, highlighted how these sessions spark change:
“The breakout sessions have been absolutely fantastic. I particularly enjoyed the human rights quiz workshop with Dr Lucy McKay. We got to see how human rights and rare disease intersect and how we’re going to move forward on this journey with those two hand in hand.”
Technology, Data and Ethics
Among the event’s standout sessions was a focus on technology and data — exploring how innovations like Digital Twins, AI, and data-driven modelling can accelerate diagnosis and personalise care. Speakers also reflected on the responsibility that comes with progress, highlighting that data must serve people, not systems.
Powering Collaboration
For many, the day wasn’t just about discussion — it was about forging practical partnerships through the ample networking opportunities provided in the exhibition and poster zones and the post event dinner. James Oakley, co-founder of Keep Me Breathing, a startup developing a CO₂ monitor for children with the rare condition CCHS, summed it up:
“The RAREsummit is so important because it can accelerate everything we’re doing. We’re now speaking with companies such as Alexion, as well as making amazing new contacts who have offered to help us in what we’re doing. And you can’t buy that.”
We’re now speaking with companies such as Alexion, as well as making amazing new contacts who have offered to help us in what we’re doing. And you can’t buy that.
Looking ahead
As CamRARE unveiled its new strategy — focused on community, research, and shared purpose — the atmosphere was one of optimism. The next decade promises breakthroughs in digital health, epigenetics, and pioneering therapies, but the charity’s leaders were clear that progress must remain patient-centred and collaborative.
Closing the summit, the message was simple yet powerful:
Progress in rare disease is no longer defined by isolated effort, but by shared purpose. The hope is that no one living with a rare condition will ever feel alone — and that every step forward, from lab to policy, will be powered by empathy, equity, and connection.
