Genetic Alliance UK in Wales:

Campaigning: Rare Diseases in Wales

Rare Disease UK was established in response to the unmet healthcare need of the millions of people in the UK living with a rare disease and who currently struggle to gain access to integrated care and support from the NHS.

RD UK are campaigning for the development of a strategy for rare diseases to ensure patients and families living with these conditions have equitable access to effective services.

A UK rare disease strategy would coordinate:

1. Research
2. Prevention, diagnosis and screening
3. Treatment Care and support
4. Information for patients and professionals
5. Planning of rare disease services

Minister for Health, Mark Drakeford and RD UK recently hosted an evening reception at the Senedd, National Assembly for Wales to mark the 6th annual Rare Disease Day. RD UK launched a report at the event, the first of its kind in Wales, on the experiences of patients and families affected by rare diseases.

The ground-breaking report, ‘Experiences of Rare Diseases: Patients and Families in Wales’ highlights some significant issues with access to services, information and support for the 175,000 people affected by rare diseases in Wales. The report can be downloaded here.

RD UK continues to work towards supporting the implementation of a national plan throughout the NHS in Wales.