"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

Latest Partners

Living with Lowes

HLRCC Family Alliance

LAM Action

Living Beyond a Diagnosis

Cystinosis Foundation UK

MLD Foundation

CDKL5 UK

Ben's Friends

Kirsty's Cause

Bone Cancer Research Trust

PVNH Support & Awareness

PID UK

You are here: Home / UK Rare Disease Strategy

A UK Strategy for Rare Diseases

In June 2009, the UK adopted the Council of the European Union’s Recommendation on an action in the field of rare diseases. This document recommends that member states ‘Establish and implement plans or strategies for rare diseases’ and that these should be adopted ‘as soon as possible, preferably by the end of 2013 at the latest’.

Since this Recommendation was adopted by the UK Government in June 2009, RDUK have been working to ensure that the UK develops a strategy that is comprehensive and effective, and accurately reflects the needs of the rare disease community.

As part of this work, on Rare Disease Day 2011 we launched our landmark report ‘Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy’ which outlines the current situation for people living with, or working in the field of, rare diseases in the UK and the actions that are needed to improve on this.

Please follow the links below for more information on a UK Strategy for Rare Diseases: