UK Plan for Rare Diseases Consultation

On 29th February, the Department of Health opened a consultation on a UK-wide plan for rare diseases. While the Alliance welcomes the development of a UK rare disease plan as a means of improving care for people with less-common conditions, the proposals currently lack vision and coherence. In particular, the Alliance wishes to see clear accountability providing equitable access to specialised services and treatments wherever you live, allied with a strong focus on outcomes. To provide the necessary leadership in implementing the plan, the Alliance urges the appointment of a national clinical director for specialised services in each of the home countries.

The consultation closes on 25th May, and is available to read here