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Fibrodysplasia Ossificans Progressiva: Research

Question for Department of Health and Social Care

UIN 58780, tabled on 19 October 2021

To ask the Secretary of State for Health and Social Care, what level of funding his Department is providing for research into (a) slowing the symptoms of and (b) finding a cure for fibrodysplasia ossificans progressiva.

This answer is the replacement for a previous holding answer.

Answered on

22 October 2021

The Department funds research into rare diseases such as Fibrodysplasia ossificans progressiva (FOP) via the National Institute for Health Research (NIHR). In the past five years, the Department has provided funding to support eight studies into FOP through the NIHR. Within the NIHR, for all disease areas, the amount of funding depends on the volume and quality of scientific activity and the usual practice is not to ring-fence funds for expenditure on particular topics.

The United Kingdom Rare Diseases Framework, published in January 2021, outlined a vision for improving the lives of those living with rare diseases, such as FOP. Further details on research into rare diseases will be provided in action plans, which will be published by each of the four UK nations within two years.

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