For the past year, Rare Disease UK, with the guidance of five Working Groups, has been working on a report looking at developing recommendations on what should be included in a strategy for rare diseases. 

The final report will be launched at four parliamentary receptions to coincide with Rare Disease Day 2011 (February 28th 2011).  Rare Disease UK are looking for feedback on the findings of the Working Groups to inform the final report.

Each of the four health departments in the UK has signalled their willingness to take the findings into consideration when developing a strategy, so your input could help inform a strategy for rare diseases.

A consultation document has been produced outlining the findings to date. The document offers an overview of the discussions of the Working Groups and it is aimed at stimulating further input.  Contributions from all interested parties, whether as an individual or on behalf of an organisation, from patients and patient organisations, to clinicians, researchers, academics and industry members to provide insight on the topics discussed.

The consultation document is accessible by clicking here (pdf). 

Responses are requested by Friday 29th October 2010 in order to allow time for production of a final report by Rare Disease Day 2011.   Kindly send responses to Lauren Limb at This e-mail address is being protected from spambots. You need JavaScript enabled to view it