The publication of the UK Strategy for Rare Diseases in 2013 represented a landmark for patients with rare diseases. It is the first time all four health departments of the UK have come together to recognise and respond to the needs of all those affected by rare diseases. The aim of the Strategy is to 'ensure no one gets left behind just because they have a rare disease'.
In the UK it is estimated that 3.5 million people will be affected by a rare disease at some point in their lives. Despite the scale of the issue, a significant proportion of these patients do not have access to the right care and treatment.
There are many examples of excellent practice for those with rare diseases throughout the UK, but unfortunately these are more often the exception rather than the rule.
The Strategy contains 51 commitments to ensure that health and social care systems across the four nations provide those living with rare conditions with the highest possible quality of evidence-based care and treatment, regardless of where they live in the UK.
The four countries of the UK have until 2020 to implement the 51 commitments in the UK Strategy for Rare Diseases. There has been differing levels of implementation in each nation. Find out what's happening below:
An effective strategy for rare diseases can secure the best use of available resources, maximise the health gain for all those with rare conditions and create a framework for the research necessary to support the development of innovative therapies for unmet medical needs.
You can join RDUK for free to show your support for a UK Strategy for Rare Diseases. The more people there are backing our campaign, the greater the pressure is on the health departments of the UK to consider rare diseases as a health priority.
You’ll also be signed up to receive our fortnightly newsletter, where we’ll inform you about the progress of the Strategy and the ways in which you can contribute to the campaign. These range from: sharing your experience, inputting into research activities, taking part in surveys, contacting your MP, marking Rare Disease Day, and much more!
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’.
After the UK's adoption of the Recommendation, we worked with our supporters to ensure that the UK's health departments acted on their obligation to develop a plan for those affected by rare diseases.
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. The report provided a comprehensive account of the experiences of those living with, or working in the the field of, rare diseases in the UK and that actions that were needed to improve on this.