We often think of rare diseases in medical terms and its easy to lose sight of the children and families at the heart of our work.
So, for the recent charity ball hosted by Sobi, the CRDN formed a contemporary dance group – ‘Unique Feet’ – featuring children with rare diseases.
The kids rehearsed together weekly for several months, and over that time a lovely sense of community has emerged. We hope to continue this… stay tuned!
Nurse Specialists provide expert advice related to specific conditions, providing specialist advice and psychological support for both the patient and family. Patients consistently rate their Nurse Specialist as higher than other health professionals in terms of both their honesty and of understanding their needs.
Read more at the AKU Society blog
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.
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.