Cambridge Rare Disease Network
Lindsey
Brown
Events & Projects Officer
Mission
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.
One in 17 people will develop a rare disease at some point in their lives – that’s 3.5 million in the UK alone and 350 million worldwide. Most of these diseases manifest in early childhood and many are life-limiting conditions.
Individually the unmet needs of those living with a rare condition are often seen in isolation. We bring their voices together to create a powerful regional chorus.
Category
Disability
Additional Information
Our aims:
We bring together all stakeholder groups involved in rare diseases in a spirit of collaboration and understanding by providing opportunities to share, learn, engage and be innovative together to improve the lives of those affected by rare disease.
We support children and families living with rare disease in our local community by providing activities to reduce isolation, offer peer support, build a community and give them a place to belong. We develop opportunities for adults living with rare conditions to connect, share experiences and form a collective voice to raise awareness and improve local services.
We create and deliver exceptional, engaging and thought-provoking educational events to help address knowledge gaps and to raise awareness about rare disease amongst health professionals, academics, industry, policy makers and the wider public . We provide a platform for UK and international thought leaders and showcase the potential of the Cambridge Cluster – the University of Cambridge, Biomedical Campus and vibrant biotech community on our many Science Parks. Events have powerful patient voices and advocacy groups at their heart.
