CamRARE’s unique biannual conference is back for 2025 – gathering scientists, researchers, tech innovators, policy-makers, funders and patient organisations to connect and collaborate.
Did you know that the CamRARE charity was formed following the first RAREsummit in 2015? So this year we will be reflecting on…
A decade of progress. A future of possibilities.
Click below to watch the highlights film from 2023 and get as taste of what’s to come.
The programme for 2025 is already packed with brilliant and unique content. Read on to find out more.
Spotlight on RAREsummit Alumni: Beyond Blood Diagnostics
At RAREsummit23, we were proud to provide a platform for emerging tech innovators to pitch solutions to real-life challenges faced by those living with rare conditions.
The winner of our innovation pitching challenge, Beyond Blood Diagnostics, wowed the judges with their vision for home-based blood testing to reduce hospital burden and improve access to diagnostics.
Since then, they’ve worked with Health Innovation East and CamRARE to explore the need for their solution within the rare disease community and build a strong business case.
We’re thrilled to welcome them back to RAREsummit25 as part of our “Where are they now?” Impact Stories from RAREsummit alumni session — and this time, they’ll also be exhibiting and demoing their tech! Don’t miss the chance to see how far they’ve come and what’s next.
Spotlight on Panels: Rare Disease Research Network (RDRN) Showcase
Following the launch of the Rare Disease Research Network platform by CamRARE and PLRH in late 2024, RAREsummit25 will spotlight three patient voices as they pitch research ideas shaped by their communities — and share exactly what they need to take them forward.
In this RDRN Showcase session, each speaker will present a lived experience-driven research priority, along with a clear call to action: are they looking for collaborators? Funding? Mentors? Study participants? A company with the right tech?
We’re excited to welcome David Hogan, patient advocate and founder of an international men’s mental health support group for rare disease. In his talk, “…And Voices for All” (inspired by Metallica’s …And Justice for All), David asks:
“How do we ensure all voices — especially those often left out — are represented in rare disease research?”
Since his diagnosis in 2017, David has connected men from around the world through honest conversations about mental health, identity, and living with rare conditions. Now, he’s calling for greater inclusion of men, LGBTQIA+ people, and other underrepresented communities in research and advocacy.
He’ll be joined by Sarah Dearman (Children’s Hyperinsulinism Charity) and Scott Hutchings (CHAMP1 Research Foundation), who will also pitch community-led research ideas and outline the support they need to take the next step.
Can you help make these projects a reality?
They’re looking for:
🔹 Expert collaborators
🔹 Mentors
🔹 Funding
🔹 Study participants
🔹 Industry partners
Be in the room where research ideas start — and help shape what happens next!
Workshops: Interactive, Insightful, and Led by You
This year, we’re bringing you a packed programme of interactive workshops where you can have your say, help shape the future, and choose the sessions that matter most to you. With a wide range of themes, there’s something for everyone — whether you’re a patient, researcher, clinician, or industry partner.
Topics include:
✔️Exploring Rare Diseases Through the Lens of Human Rights – with the RDI-Lancet Commission
📊 Empowering Patient Groups with Real-World Evidence
🧬Naming Genetic Conditions: Language, Identity, and Ethics
🇬🇧 The Future of the UK Rare Disease Framework
🌐 Rare Diseases in Online Spaces: Community, Safety & Voice
Come ready to connect, collaborate, and contribute to real change.
How you can get involved
Share Your CamRARE Impact Story!
Have you got a great CamRARE event story to tell?
Did you meet someone, hear something, or spark an idea at one of our events that led to a meaningful collaboration, new project, or real-world impact?
We’re looking for stories of connection, inspiration, and change sparked by past CamRARE events — and we’d love to feature them at RAREsummit25.
Got an idea for a discussion or worshop?
Submit an Expression of Interest.
Networking Dinner
As the sun sets on an inspiring day of bold ideas and promising connections, we invite you to gather for the grand finale.
Raise a glass to 10 years of CamRARE — a decade of driving change, championing collaboration, and giving voice to the rare disease community.
Enjoy a delicious three-course fine dining experience at Hinxton Hall, on the Wellcome Genome Campus, with a glass of wine or a soft drink on arrival and an opportunity to keep the conversations going!
Let’s toast to the past, the present, and the future we’re building together.
Thank You Sponsors!
We couldn’t do this without the support of our fabulous sponsors – a huge thank you to all! Will YOU join us?
