Department of Health and Social Care written statement – made am ar 29 Chwefror 2024.
The government has published England’s third Rare Diseases Action Plan on GOV.UK today, on international Rare Disease Day.
Rare diseases are those affecting less than 1 in 2000 in the population. Although rare diseases are individually rare, they are collectively common with 1 in 17 people being affected by a rare disease at some point in their lifetime. 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 challenges with the health and care system. The National Conversation on Rare Diseases received nearly 6,300 responses and helped us to identify the four priorities of the 2021 UK Rare Diseases Framework: faster diagnosis, increased awareness of rare diseases amongst healthcare professionals, better quality of care and improved access to specialist care, treatment and drugs.
This 2024 England Rare Diseases Action Plan is part of the government’s continued commitment to improve the lives of those living with rare conditions. This year’s Action Plan provides an update of the progress made against actions outlined in the 2023 and 2022 Action Plans and sets out 7 new actions to continue to address the priorities highlighted in the UK Rare Diseases Framework.
The government has shown strong leadership in addressing the concerns faced by the rare diseases community over the past year, key achievements include:
The 2024 Action Plan also includes significant new commitments against the Framework priorities, developed collaboratively with our delivery partners across the health landscape, and in close consultation with members of the rare disease community. These include:
Under the Action Plan, the millions of people with rare diseases in England will see more efficient and equitable access to care and new treatments introduced. Over the coming year, we will closely monitor the progress of these actions, seeking input from those living with rare diseases to ensure we are measuring the outcomes that matter most. Progress will be reported in 2025, as part of England's commitments to report annually over the 5-year lifetime of the UK Rare Diseases Framework.
Through this third action plan, we will continue to take steps towards achieving our overarching vision – delivering improvements in diagnosis, awareness, treatment and care, and creating lasting positive change for those living with rare diseases.