Vision UK rare disease strategy

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 has 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:

RDUK (in conjunction with the Department of Health in England and Great Ormond Street Hospital, GOSH) held an event to mark the publication of the UK Strategy. The event was an excellent opportunity to find out more on the UK Strategy and network with those interested in the field of rare disease.

A number of high-level speakers presented, including:

  • Earl Howe, Minister in charge of rare diseases.
  • Dr Mike Berwick, Deputy Director of NHS England.
  • Alastair Kent OBE, Chair of Rare Disease UK
  • Rosalind Smyth, Professor of Child Health and Director of the Institute of Child Health
  • Baroness Tessa Blackstone, Chair of Great Ormond Street Hospital
  • David Goldblatt, Director of Clinical Research & Development UCL

Earl Howe announced key themes in the UK Strategy, stating that a priority of the Strategy is to empower patients; ensuring that patients are listened to, informed and consulted every step of the way. The Minister confirmed the Government was committed to working closely with patients groups and others to improve services for those affected by rare conditions.

Josh Tucker / Rare Disease UK

Strange Rare Diseases You Have to See to Believe  — Top Secret Writers
We are both curious and fearful of any new disease that we hear about. We stayed glued to the TV news if we hear of an “outbreak” of some sort. We fear as much as we investigate.

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