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.
Key Features Of The Strategy
A clear personal care plan for every patient that brings together health and care services.
Making sure patients, their families and carers have the information they need, are listened to and consulted.
Developing better methods of identifying and preventing rare diseases.
Improving diagnosis and earlier intervention for those with a rare disease.
Better education and training for health and social care professionals.
Building on research to improve personalised approaches to healthcare for those with a rare disease.
What’s Happening Now?
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 Rare Disease UK 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!