Skip to content


UK plan for rare diseases

This consultation has been developed jointly by the four nations of the UK. It sets out a coherent and joined up approach to tackling rare disease.
Start of consultation: 29/02/2012
End of consultation: 25/05/2012

The Department of Health has published a summary of the responses received to the consultation on a ‘UK Plan for rare diseases’ on behalf of the four Health Administrations.

All of the consultation responses received, including those in this summary, will be used to inform production of the final UK plan. In line with the 2009 European Council Recommendation on Rare Diseases, the final UK plan is expected to be published by the end of next year. The European Council Recommendation aims to introduce measures at European level to combat rare diseases.

This summary forms an interim stage in the production of the final plan, first outlined in February 2012. It includes responses to the consultation from clinicians, GPs, NHS commissioners, researchers, patient support groups, specialist organisations, pharmaceutical industry, patients and carers.

The summary of responses can be found on the Department of Health website