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Fibrodysplasia Ossificans Progressiva: Health Services

Question for Department of Health and Social Care

UIN 56878, tabled on 15 October 2021

To ask the Secretary of State for Health and Social Care, what steps he is taking to improve patient outcomes for people with fibrodysplasia ossificans progressiva.

Answered on

22 October 2021

The United Kingdom Rare Diseases Framework outlines key priorities to improve the lives of those living with rare diseases, such as Fibrodysplasia ossificans progressiva (FOP). These include faster diagnosis, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatment and drugs and pioneering research. Each of the four UK nations will publish action plans outlining how these priorities will be addressed to improve patient outcomes within two years.

Children with FOP are cared for in the National Health Service by paediatric rheumatologists and/or geneticists with input from other clinicians as required. In the past five years, the Department has provided funding to support eight studies into FOP through the National Institute for Health Research. The National Institute for Health and Care Excellence is also developing highly specialised technologies guidance on ‘Palovarotene for preventing heterotopic ossification associated with fibrodysplasia ossificans progressiva’.