The recent opening of The Zayed Centre for research, a dedicated rare disease centre which is a part of Great Ormond Street Hospital, is incredibly exciting for the rare disease community as a whole.
On 23rd September, Rick and Mary Rose attended Cambridge Rare Disease Network’s RAREsummit at the Wellcome Genone Genome Campus in Hinxton.
Taking place from 19 – 23 January 2020 in London, UK, for the first time the world’s leading experts in EB research, clinical management, and the EB Community will be brought together in one place – the 2020 EB World Congress.
On Friday 2nd August, team Findacure held a strategy day at Mary Rose’s house to discuss our aims over the next year, accompanied by her adorable cat, Jasper.
Seven years in the making: SONIA 2 and DevelopAKUre results analysed and positive trends identified!
Findacure would like to congratulate our co-founder Nick Sireau and office mates the AKU Society on the news that analysis of data from the SONIA 2 clinical trial has now been completed and very positive trends have been identified!
The past few weeks have certainly been varied for the team here at Findacure! Taryn, Mary Rose, and Rick have all been out and about raising awareness of rare diseases!