Celebrating Rare Disease Day at the Scottish Parliament
- Posted on Mar 13, 2017
The Brittle Bone Society attended the Scottish Parliament on 1st March to celebrate Rare Disease Day. Professor Stuart Ralston showcased the work involved in the TOPaZ trial and his collaboration with the BBS.
During our visit, we heard from the Cabinet Minister for Health in the Scottish Parliament, Shona Robison MSP, as well as Bob Doris MSP who attends the Cross Party Group on Rare, Genetic and Undiagnosed Conditions.
NHS officers spoke about work in the recently launched Scottish Genomes Study (to work with the 100,000 genomes project).
Professor Jonathon Berg from Dundee University talked about great strides forward in diagnosis and research.
Finally, we listened to moving testimonies from patient groups and from a lady with Ehlers-Danlos syndrome about her struggle to be diagnosed; and we heard from others with rare conditions of their journey to gain better treatment and care.
The BBS is pleased we have some projects on our horizon giving some hope for the future. Rare Disease UK reminded us all that the patient voice is crucial as we move forward.
Patricia and Coreen met with colleagues Liz Dougan, and friend Paul Connor who was there representing Kyowa Kirin.