Celebrating Rare Disease Day at Scottish Parliament
Mar 1, 2018
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 Brittle Bone Society. During the visit there were speeches from the Cabinet Minister for Health in the Scottish Parliament Ms. 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 (worling alongside England’s 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 including 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 Brittle Bone Society is pleased to have some projects on its horizon giving some hope for the future of rare disease. 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 Paul Connor representing Kyowa Kirin at the event.