Making rare diseases visible and vocal, SEEN AND HEARD
Cambridge Rare Disease Network
Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, and working together, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.
Buildings supportive communities
We know that living with a rare disease can be scary, overwhelming and isolating.
We’re building a thriving network of individuals, families, advocacy groups and the professionals who work with them so they can engage, listen to and support each other better.
Building supportive communities for better patient outcomes.
Educating, connecting, collaborating
Each rare disease affects few people but with 8000 different conditions affecting 400 million people worldwide, they are individually rare, but collectively common.
Only 5% of these rare diseases have a treatment. We want to change that.
We’re gathering leading scientists and the latest technology together with patients and healthcare to offer new hope for treatments and better co-ordination of care.