Asked by: Lord Caine (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what plans they have, if any, to expand the provision of specialist NHS care and treatment for people suffering from fibrodysplasia ossificans progressiva.
Answered by Lord Kamall - Shadow Minister (Health and Social Care)
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.
Asked by: Lord Caine (Conservative - Life peer)
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.
Answered by Lord Kamall - Shadow Minister (Health and Social Care)
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what plans they have, if any, to increase research funding in order to find more effective treatments and a cure for fibrodysplasia ossificans progressiva.
Answered by Lord Kamall - Shadow Minister (Health and Social Care)
The Department funds research into rare diseases such as fibrodysplasia ossificans progressiva (FOP) via the National Institute for Health Research (NIHR). In the past five years, the Department has provided funding to support eight studies into FOP through the NIHR. Within the NIHR, for all disease areas, the amount of funding depends on the volume and quality of scientific activity and the usual practice is not to ring-fence funds for particular topics.
The UK Rare Diseases Framework, published in January 2021, outlined a vision for improving the lives of those with rare diseases, such as FOP, including a focus on pioneering research. Action plans setting out further details on this research will be published by each of the four United Kingdom nations within two years. A copy of the Framework is attached.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what support they are giving to families who are caring for family members suffering from fibrodysplasia ossificans progressiva.
Answered by Lord Kamall - Shadow Minister (Health and Social Care)
For patients with rare diseases such as fibrodysplasia ossificans progressiva, expert centres provide clinical guidance, support and advice to patients, their families and carers. The NHS Long Term Plan set out ambitions to improve the identification and support of unpaid carers. These ambitions include providing timely information and support for contingency planning; developing more integrated support systems within primary care; support for young carers; and work to ensure that carers from frequently excluded communities are engaged and enabled to use services.