Question to the Department of Health and Social Care:

To ask Her Majesty's Government what specialist care and treatments are currently available through the NHS for people suffering from fibrodysplasia ossificans progressiva.

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.

New medicines and treatments for ultra-rare diseases such as FOP are considered via highly specialised technology (HST) evaluations by the National Institute for Health and Care Excellence (NICE). NICE is currently developing HST guidance on palovarotene for preventing heterotopic ossification associated with FOP.

The UK Rare Diseases Framework, published in 2021, outlined four key priorities to improve the lives of those living with rare diseases, such as FOP, including improving access to specialist care, treatment and drugs. Action plans to improve access to care and treatment will be published by each of the four United Kingdom nations within two years. A copy of the Framework is attached.