welcome

Celebrating Rare Disease Day at the Scottish Parliament

BBS attended Scottish Parliament 1 March to celebrate Rare Disease Day. Professor Stuart Ralston showcased the work involved in the TOPAZ Trial, and his collaboration with the BBS  - and you can find out more here.

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 working group for rare disease.

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 testimony 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. RDUK reminded us all that the patient voice is crucial as we move forward.


Patricia and Coreen met with colleagues Liz Dougan, and friend Paul Conor who was there representing Kyowa Kirin.