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Fibrodysplasia Ossificans Progressiva: Research

Question for Department of Health and Social Care

UIN 184756, tabled on 11 May 2023

To ask the Secretary of State for Health and Social Care, what steps he is taking to improve international collaboration on research into (a) slowing the symptoms of and (b) finding a cure for fibrodysplasia ossificans progressiva.

Answered on

18 May 2023

The United Kingdom is committed to building international connectivity so that data and expertise can be shared for the benefit of people living with rare diseases. International collaboration is a cross cutting theme of the UK Rare Diseases Framework and we continue to engage with initiatives such as the Horizon Europe Partnership on Rare Diseases and the World Health Organization Global Network for Rare Diseases. The Department funds research through the National Institute for Health and Care Research (NIHR). In the last five years, the NIHR has supported the delivery of eight studies relating to Fibrodysplasia Ossificans Progressiva via NIHR infrastructure, which includes research on potential treatments.