In January 2018 CRDN visited the 2 day GenomicsFest at ExCel in London hosted by Front Line Genomics. We heard inspiring talks and made great connections for the future. It was exciting to see Rare Disease charities and individuals taking to the stage to share the importance of genomics in diagnosis and personalised treatment and to give the science a human side.
The Transforming Genetic Medicine Initiative have written a great blog about the patient centred focus of the festival which we share here. Read on to see how rare disease charities, individuals and advocates had their say…….
Patient-centered focus at Festival of Genomics
Thanks to http://www.thetgmi.org for allowing us to share their blog
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
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.