Today the third action plan setting out how the Department of Health and Social Care and delivery partners will implement the UK Rare Diseases Framework in England has been released

The UK government and devolved administrations published the UK Rare Diseases Framework in January 2021, setting out a shared vision for addressing health inequalities and improving the lives of people living with rare diseases across the UK.

The framework outlined 4 key national priorities:

  • helping patients get a final diagnosis faster
  • increasing awareness among healthcare professionals
  • better co-ordination of care
  • improving access to specialist care, treatment and drugs

To turn this vision into action, each of the 4 UK nations has committed to developing nation-specific action plans detailing how these priorities will be addressed.

This is England's third Rare Diseases Action Plan, following our commitment to publish action plans annually during the lifetime of the UK Rare Diseases Framework. This action plan has been developed in close collaboration with delivery partners across the health system and the rare disease community. The 2024 England Rare Diseases Action Plan will report on progress against our existing 29 actions as well as introducing 7 new actions to improve the lives of people with rare diseases for the year ahead.

England Rare Diseases Action Plan 2024: main report

England Rare Diseases Action Plan 2024: annexes

In a statement released by made by Andrew Stephenson, Minister of State (Minister for Health and Secondary Care) he said,

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.

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

We welcome the third action plan launch today and appreciate the focus on increasing the knowledge of healthcare professionals in rare diseases. We have been campaigning for a focus on care coordination and access to specialist care and treatments, especially with a disease such as Huntington's. I am pleased to see Huntington's disease as well as access to specialist care is acknowledged in the Minister's statement.

Who is affected by Rare disease?

There are at least 8,000 people in the UK affected by Huntington's disease with a further 32,000 at risk. Thanks to the Genetic Alliance for creating this infographic about who is affected by Rare Diseases.

Rare conditions factsheet 01

Rare conditions factsheet 02

Access the infographic on rare diseases.