Highlights from the inaugural RAREsummit organised by Cambridge Rare Disease Network (CRDN) and hosted at the Wellcome Genome Campus, are now available to watch here.
RAREsummit was a one day breakthrough event back in September 2019 with the motto ‘Patient as Partners.’ It brought together academics, scientists, medics, investors, entrepreneurs, government ministers and patient advocates to focus on innovative, patient-centred approaches in rare disease progress.
There were keynote talks and exhibitions showcasing examples of patient, caregiver and advocacy groups’ involvement in the development of treatment, healthcare and assistive technologies as well as companies and researchers demonstrating their commitment to developing meaningful partnerships with the rare disease patient community.
On The Pulse at RAREsummit
We were proud to support RAREsummit and delighted to have taken part in the programme with On The Pulse director, Laurence Woollard, delivering a short talk about developing an education and self-management programme for and with young people affected by haemophilia.
Watch it in full below:
Dive into the official review of RAREsummit 2019 here.
There is also a comprehensive report from a cross-sector discussion at the event, which aimed to identify priorities for the post-2020 framework of the UK Strategy on Rare Diseases.
To find out more about the CRDN and view social media content from #RAREsummit19, please visit their website.
To keep up to date with events at the Wellcome Genome Campus, please follow this link.
On The Pulse