We build cross-
sector networks to
improve outcomes
for people with
rare diseases
It’s estimated that one in 17 people will develop a rare condition at some point in their life – that’s around 3.5 million in the UK alone, and over 350 million worldwide. If we were to consider their close families, we could estimate that a rare condition will impact one in five of us. Individually the unmet needs of those with a rare condition are often seen in isolation. Cambridge Rare Disease Network brings their voices together to create a powerful chorus to demand and create change.
We put those living with rare conditions at the heart of everything we do. We’re creative, innovative, and boldly challenge the status quo.
We believe that collectively those affected by different rare conditions and the professionals who work with them can significantly influence service delivery at every level, ensuring their collective needs are met.
With recent advances in medicine and genetics, we’re more able than ever before to diagnose and treat rare diseases. We can even see cures on the horizon.
Patients are now living longer, so it is vital that health, education and social systems are aware of progress and plan effectively to keep pace with these advances to ensure the best care.
CamRARE brings together stakeholders from families, research, industry, business, healthcare and patient advocacy groups making a real and positive difference in the lives of people with rare diseases.
300+
children and families supported locally
2000+
people in 60 countries using our Rare Patient Passport
200+
beneficiaries in Cambridge and around
4000+
engaged
across our events
Connection, Collaboration, Community
• Children, young people, and adults with rare and undiagnosed conditions.
• Families navigating emotional, medical, and social challenges
• Diverse, multi-ethnic, and medically complex community across the East of England.
• Health & care professionals & researchers who want to listen better and design more inclusively
• Companies and research organisations that want to innovate with purpose
• Childcare, schools and further education that want our community to thrive
• Patient groups and umbrella charities who want to collaborate
Meet our local
community →
Come along to
our next event →
Join our companies
forum →
Discover our latest
research project →