RAREfest18: a 2-day rare disease inspired festival
The Guildhall, 2 Wheeler Street, Cambridge CB2 3QB
It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively. Free to attend, this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this. RAREfest will raise awareness of rare conditions and bring together all stakeholders in the rare disease community alongside the general public from across Cambridgeshire and beyond.
Alastair Kent, OBE FRSA
Alastair was the executive director of Genetic Alliance UK (the UK alliance of over 200 patient support groups for patients and families with rare and genetic disorders) for almost 25 years.
Growing up with a rare disease isn’t always easy, but it does make for some great anecdotes. CRDN founding member and Cambridge graduate Abbi Brown tells some of her favourites.
After being diagnosed with the muscle wasting disease Muscular Dystrophy (MD) aged 18 in 1984, Michael made history 20 years later by becoming the first disabled person to lead expeditions to the North and South Poles.
James Risdon is a recorder player based in London. He has a rare eye condition, Leber’s Congenital Amaurosis, and learns all his repertoire from Braille. He is a member of the newly-formed Brewery Band who performed at the Edinburgh Fringe in August 2017.
Check the website for a full list of speakers and activities