International Rare Disease Day - update on the Rare Disease action plan

Today on International Rare Disease Day the Government has published England's second Rare Diseases Action Plan. The 2023 England Rare Diseases Action Plan goes further than ever before to support people living with rare diseases. Building on progress made in the last year, it will make sure people can access specialised care, treatment, holistic support across services and can take part in research should they want to.

The news was announced with a statement by Helen Whately, Minister of State (Minister for Social Care),

Approximately 3.5 million people in the UK are living with one of over 7,000 rare diseases, such as muscular dystrophies or Huntington's disease. People living with rare diseases often face complex journeys to diagnosis, treatment and care.

The government's Action Plan is part of its continued commitment to improve the lives of those living with rare conditions, as outlined in the 2021 UK Rare Diseases Framework. It follows publication of England's first Rare Diseases Action Plan in February 2022, and highlights progress made in the past year, as well as setting out 13 new actions for the year ahead.

Cath Stanley, Chief Executive of the Huntington's Disease Association said,

"The Huntington's Disease Association welcomes the publication today of the 2023 Rare Disease Action plan. We are thrilled that Helen Whately, Minister for Social Care specifically mentioned Huntington's disease, when announcing the publication. The key pieces of this plan that will have significant implications for those with Huntington's disease are the emphasis on the importance of care co-ordination, specialist care, and access to mental health support. The emphasis on ensuring those with rare diseases are able to access new treatments when they are available is of vital importance for the coming years."
Although rare diseases are individually rare, they are collectively common, with 1 in 17 people affected by a rare disease at some point in their lives, such as spinal muscular atrophy, haemophilia A, epidermolysis bullosa or Huntington’s disease. This new plan will increase data sharing so we can, for the first time, get a full picture of how people are tested for genetic diseases across England and help get patients a diagnosis faster.

England's Rare Disease Action Plan