Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy 

On Rare Disease Day 2011 we launched our report ‘Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy’ which outlines our recommendations for a UK strategy for rare diseases.

This report was developed over 18 months and over 1000 stakeholders and organisations from a wide range of backgrounds contributed to its production. We believe this to be the most comprehensive and wide-ranging review of services for patients with rare diseases ever undertaken in the UK.

RDUK would like to thank all those who contributed to the development of this report, and we look forward to continuing to collaborate in moving forward to the implementation of the proposals.

Click here to download the full report.

If you would like a hard copy, please email

 

Briefing Papers

Please follow the below links to read why a strategy for rare diseases would be beneficial in each of the home nations of the UK. These papers also include examples of good practice in each nation which we believe should be used as models on which to base new services.

• England
• Wales
• Scotland
• Northern Ireland

 

Overview of the report

This report covers five broad topics that a strategy should address and outlines the current situation of each and recommendations to improve this situation.

Click here to view the summary of the report.

Click here to download the report summary as a pdf.

 

Next steps

Following the launch of our report ‘Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy’, RDUK will continue to campaign for the development of an effective strategy by the health departments of the UK.

This will include us working with relevant officials within the health departments, running election campaigns to raise awareness of the issue of rare diseases amongst politicians and to encourage them to sign our pledge to support a rare disease strategy, and responding to relevant policy documents. When the Department of Health releases the consultation document, expected in autumn 2011, we will be thoroughly responding and assisting our members to also do so.

Following the launch of the strategy from the Department of Health, RDUK will be working to ensure the implementation of the strategy in practice. We will be working with the various bodies and organisations tasked with the implementation of specific recommendations to help them effectively fulfil their obligations. We will also be carrying out work to assess the success of implementation of the strategy and the effect it has had on patients.

 

Media coverage

A considerable amount of media coverage was generated from the launch of this report and Rare Disease Day. A summary of this can be seen here.