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Rare disease plan final progress report published

  • Area of Work: The ALLIANCE
  • Type: News Item
  • Published: 24th February 2021
Illustration of a desk scene, with a laptop displaying the word 'report' on the screen

Progress has been completed on most of the commitments made, giving a strong base to build on with the commencement of a new strategy.

The Scottish Government have published their Final Progress Report on their “It’s Not Rare to Have a Rare Disease” plan (this link will take you away from our website). This was their implementation of the 2013 UK Strategy for Rare Disease, which included 51 commitments. Of these, the Scottish Government report they have completed a total of 44, and made progress against the remaining seven. There are no commitments which have seen no progress over the course of the strategy.

This has led to substantial advances in the diagnosis, treatment and care of people with rare diseases. ALLIANCE programmes and initiatives including the House of Care and What Matters To You? are referenced in the report as having informed this progress.

In a letter accompanying the report (this link will take you away from our website) Mairi Gougeon MSP, the Minister for Public Health and Sport laid out some of the key achievements. These include the establishment of the Congenital Anomalies Register (CARDRISS) which when fully operational will help inform the care of babies born with congenital anomalies over the course of their life, investment in genomics research and testing, and the Rare Disease Forum bringing together people with lived experience, professionals and other stakeholders.

The UK Government set out a renewed Rare Disease Framework in January 2021 (this link will take you away from our website), which the Minister also committed to continuing to support. A further Scottish Government Action Plan, to be overseen by a Rare Disease Implementation Board, will be published later this year, followed by a Scotland-specific Genomic Healthcare Implementation Plan.

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