RARE Daily

Study Find UK Invested $1.2 Billion in Rare Disease Research from 2016 to 2021

September 27, 2023

Rare Daily Staff

A new report on the rare disease landscape in the United Kingdom finds that from 2016 to 2021, the Medical Research Council and National Institute of Health and Care Research invested $1.2 billion in rare disease research.

The report, published ty the National Institute for Health and Care Research in collaboration with the Medical Research Council and others, found rare disease research accounted for 7 percent of the total number of awards funded, and 7 percent of the total value of funding through NIHR Programs and the MRC joint research portfolio. It represents almost $762 million (£627 million) invested by both organizations across 698 awards from 2016-2021.

Of this, motor neuron disease (led by amyotrophic lateral sclerosis) received the single largest amount of funding in the portfolio at around 8 percent. This was followed by a high number of awards given to research on Huntington’s disease (5 percent), cystic fibrosis (4 percent), frontotemporal dementia (4 percent), and idiopathic pulmonary fibrosis (3 percent).

The investment included $121.2 million (£99.7) million invested into MRC fellowship and NIHR career development awards during the five-year period, which reflects wide-ranging surrounding support for rare disease research.

During the timeframe, more than 500,000 participants were recruited to take part in rare disease research studies that were open or active through research supported by the NIHR Clinical Research Network.

The MRC provided funding to research institutes, units and centers across the United Kingdom in addition to grant-supported research projects in universities, hospitals, and other research organizations. Of the 177 charities that were members of the Association of Medical Research Charities (AMRC) from 2016 – 2021, 107 invested $705 million (£580 million) into more than 2,600 rare disease research studies. Charities funding research into specific rare diseases invested in research but 84 percent of funding was from charities with a broader remit.

“We know that it is essential to support research and innovation for patients affected by rare diseases and their families, so that we can offer more hope on improving care, diagnosis and treatment,” said Lucy Chappell, CEO of the NIHR. “This report is the first time anyone has captured a detailed picture of the rare disease research being funded across the UK. Our findings are another step in understanding the strength and diversity in rare disease research.”

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