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..
KIDS have launched a new suite of resources to support families and carers of disabled children and young people to help them navigate the reforms to Special Educational Needs and Disability provi..
EURORDIS (European Organisation for Rare Diseases) is conducting a survey into the difficulties people are facing in accessing treatment for rare conditions. The survey is in the form of an anonymous ..