With 1 in 17 Britons born with or developing a rare disease, and with medical advances offering exciting new treatments to extend the lives of rare disease patients, we need innovative new options in holistic, patient-centred healthcare – such as rare disease specialist nurses.
Current care options for rare diseases put the burden on the patient to navigate multiple specialists, cover expensive travel and potentially spend long spells in hospital. This results in missed diagnoses, missed opportunities for treatment and leads to higher healthcare costs for patients and healthcare networks.
Cambridge Rare Disease Network is pleased to announce that they have received Big Lottery funding. We are delighted to receive the support of the Big Lottery as this will ensure we develop our Network professionally and enable our work to raise awareness of rare diseases to grow.
Developing and using our collective intelligence – using digital and social technologies to support and enhance the work of thinking beyond the capabilities of any individual person- will be vital as we take on the key challenges of coming years; our climate, managing our resources, health, ageing population.
Lydia Nicholas of Nesta blogged about the 2015 Cambridge Rare Disease Summit, sharing some examples of collective intelligence ‘in the wild’.
Read her post on the Nesta website.
In the lead-up to Jeans for Genes Day, Cambridge’s best-known rare disease advocate Professor Stephen Hawking will address the inaugural Cambridge Rare Disease Summit, at the Cambridge Judge Business School on Monday 14 September.