Our vision is a world where everyone affected by a rare condition feels connected, empowered, and supported
Community
Connecting families of children with rare and undiagnosed conditions across the East of England
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RAREsummit26
Hosting events where rare disease connections come to life and inspire meaningful change
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Support Us
Help us reach more families, raise more voices and enable more valuable connections and collaborations
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Driving progress through shared knowledge, inclusive research, and a thriving network
Why do we need rare advocacy?
It’s estimated that 1 in 17 people will develop a rare condition at some point in their lifetime – that’s around 3.5 million in the UK alone, and over 350 million worldwide.
The journey with a rare or undiagnosed condition is complex, uncertain and isolating, with only 5% having an approved treatment. People frequently experience delayed diagnosis, fragmented care, and difficulty accessing appropriate support.
What does CamRARE do?
We centre people with rare conditions at the heart of everything we do.
CamRARE works to connect individuals, healthcare professional, researchers, industry and policy makers to turn collaboration into action and improve the lives of people affected by rare conditions.
Projects, events and collaborations with meaningful impact
Rare Passport
A personalised health and care communication tool for anyone with any rare condition, of any age, anywhere
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RD-RN
Rare Disease Research Network is turning research on its head through a community driven, cross sector platform
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Companies Forum
Will your organisation join the forum to unlock the transformative power of open cross sector collaboration
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RAREsummit26
Join us on Wednesday 7 October 2026 at Hinxton Hall Conference Centre or Online
A flagship CamRARE event gathering great minds in rare diseases to make connections, exchange ideas and openly debate possibilities.
With thanks to OUR CURRENT SPONSORS AND GRANT FUNDERS
