To ask the Secretary of State for Health and Social Care, what support his Department provides for (a) people diagnosed with fibrodysplasia ossificans progressiva and (b) their families.
18 May 2023
There is no specific prescribed service for treatment of fibrodysplasia ossificans progressiva (FOP). However, children with FOP are cared for by National Health Service paediatric rheumatologists and/or geneticists with input from other clinicians as required. For patients with rare diseases such as FOP, expert centres provide clinical guidance, support and advice to patients, their families and carers.