What better way to start off the New Year than with a new UK Rare Disease Framework that’s been created by the rare disease community for the rare disease community.

Seven years have passed since the 2013 UK Rare Disease Framework was published and we’re thrilled to say that considerable progress has been made over the course of that time. Although we’ve enjoyed many successes as a rare disease community, we acknowledge that there is still work needed to be done to improve the lives of those touched by rare disease.

Close to 6,300 rare disease community members took it upon themselves to help shape the new UK Rare Disease Framework that was released this week by participating in the National Conversation on Rare Diseases Survey in October 2019. We want to thank you for sharing your lived experience with those who can enact real change.

If you haven’t had a chance to read the new UK Rare Disease Framework in full, we’ve summarised its contents for you below!

UK Rare Disease Framework Key Priorities 

The new UK Rare Disease Framework focuses on improving the four key challenges that were identified as significant by the rare disease community in the National Conversation on Rare Diseases Survey. These four challenges were:

  1. Reaching a diagnosis faster
  2. Increasing awareness of rare diseases amongst healthcare professionals
  3. Providing better coordination of care by healthcare professionals
  4. Increasing access to specialist care, drugs and treatments

UK Rare Disease Framework Key Themes

These four challenges, or priorities as the framework calls them, are underpinned by five key themes, namely:

  1. Patient Voice is Vital to Rare Disease Progress and Change
  2. Collaboration Across Countries and Sectors
  3. Improve Research Funding
  4. Increase Data Sharing
  5. Alignment of Rare Disease Policy with Mental and Social Healthcare

The new UK Rare Disease Framework will provide the strategic direction for all UK rare disease research, care and policy for the next five years.

The UK Rare Disease Framework released this week marks the end of Phase 1. Phase 2 has now begun, which means that the four nations (England, Scotland, Wales and Northern Ireland) must develop a specific and measurable action plan outlining the steps they plan to take to meet the principles of the new framework in their home nation.

Each nation’s action plan will be reviewed regularly (every one to two years) to ensure that the framework’s requirements and principles are being met. The four nations will have two years to develop and publish their action plan. We expect the nations to turn to the rare community for its input and lived experiences to create an action plan that works to improve the lives of all rare disease patients.

If you want to read the new framework in full, please follow the link below: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/950651/the-UK-rare-diseases-framework.pdf


The new UK Rare Disease Framework is here!

by Blayne Baker time to read: 3 min