Review reveals £1.1 billion of UK rare disease research funding, with significant portion going to CF

A recent review published by The National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), has revealed the funding for vital research into rare diseases totalled £1.1b over 5 years. Around 3.5 million people in the UK are living with a rare disease, including almost 11,000 with cystic fibrosis. Around 95% of these health conditions lack an effective treatment.

Between 2016 and 2021, an investment of almost £627 million was made by the NIHR and the MRC across 698 studies into rare diseases. 4% of these grants awarded were on cystic fibrosis, one of the most significant amounts of funding in the portfolio.

A further £580 million was contributed by 107 charities that were members of the Association of Medical Research Charities (AMRC), of which Cystic Fibrosis Trust is a member, into over 2,600 rare disease research studies.

The report identified 254 of these rare disease research projects supported by industry, of which cystic fibrosis was the most researched health conditions. The findings of the review will help identify areas for future funding and better target the needs of people with rare diseases.

Click here to read the report in full

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