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<p>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.</p><p>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.</p><p>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.</p>
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