Rare Disease Action Plan 2024 Launched, NIHCR Welcomes

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The UK Government's Rare Disease Action Plan 2024 has been published, detailing what the NIHR, DHSC, and others have done over the past year to better meet the needs of patients with rare diseases.

Rare diseases are Ditto. It affects less than 1 in 2000 people. Most of these diseases are genetic. However, while each condition is rare, most are common and affect around 3.5 million people in the UK. It is estimated that there are more than 7,000 rare diseases, and new diseases are being identified to advance research. About 80% of rare diseases have a confirmed genetic origin, but other causes include allergies or disease.

The new project will review progress based on two action plans. The plans are in place for next year, 2022 and 2023.

In July 2023, the results of the MRC/NIHR funding application for the UK Rare Disease Research Platform, which invested £14 million for five years. The park includes co-ordinating offices in universities across the UK and 11 research units across the UK. We will accelerate the understanding, diagnosis, and treatment of rare diseases by promoting collaboration between academic, clinical, and industrial research and people living with rare diseases, research institutions, and other stakeholders.

2023 In September 2018, the NIHR collaborated with the UK. Health Research Council, industry, charities, and organizations tasked with producing a report on the rare disease research environment. Covering the period 2016 to 2021, the report provides a comprehensive picture of where rare disease research is taking place across the UK and who is funding it. A unique algorithm was developed to identify rare disease studies. The search protocol and data supporting the report have been published in full on NIHR Open Data. Publishing the report completes the first step of Activity 15. Over the next year, we will work with the rare disease community to identify research areas and priorities.

Working with the DHSC, we will conduct user research into the use of rare diseases on the NIHR Be Part of Research site. Research Facilitates people's access to clinical trials.