NHS England is currently failing to properly support patients with TSC and the dedicated NHS professionals who care for them. It is vitally important that we continue to campaign for implementation of..
We are delighted to announce a new award to support career development of young scientists. The first Ann Hunt Career Development Award to will support a PhD student working with Professor Petru..
Earlier this year we joined forces with the Genetics Alliance and the Association for Glycogen Storage Disorders to petition the National Assembly for Wales to review the use of the exceptionality rul..
The Northern Ireland government's draft implementation plan for the UK Rare Disease Strategy was launched for public consultation on 27th October at a well attended second AGM and Autumn Seminar o..