Invest in FOP research to support this ultra-rare disease community. Research into FOP could inform the understanding/treatment of many more common conditions such as osteoporosis, hip replacements, DIPG (a rare childhood brain cancer) and many common military injuries.
1. Dedicate funding for research into Fibrodysplasia Ossificans Progressiva (FOP)
01/07/2021 - Petitions
Found: Invest in FOP research to support this ultra-rare disease community. Research into FOP could inform the
2. Brain tumour awareness and research
07/09/2020 - Early Day Motions
Found: both awareness of and research into brain tumours; notes that this type of cancer presently receives less
3. Brain tumour research: task and finish working group report
22/02/2018 - Department of Health and Social Care
- View source
Found: and Finish
Working Group on
Brain Tumour Research
2 You may re
-use the text of this document
4. Cancer treatment
18/04/2018 - Parliamentary Research
Found: PACK Number CDP2018/0090, 5 April 2018 Cancer treatment By Dr Sarah Barber Nikki Sutherland This
5. DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG)
01/12/2016 - Early Day Motions
Found: intrinsic pontine glioma (DIPG) is the second most common type of primary, high grade brain tumour in children
1. Childhood Cancers: Research
07/12/2020 - Westminster Hall
1: there have been some changes to normal practice to support the new call list system and to ensure that social - Speech Link
2: considered e-petition 300027, relating to research into childhood cancers. It is a pleasure to serve - Speech Link
2. Diffuse Intrinsic Pontine Glioma
14/11/2017 - Commons Chamber
1: diffuse intrinsic pontine glioma, a rare form of childhood brain tumour.I applied for this debate - Speech Link
3. Child Cancer
28/11/2016 - Westminster Hall
1: considered e-petition 162934 relating to child cancer.It is a pleasure to serve under your chairmanship - Speech Link
4. Paediatric Cancers of the Central Nervous System
22/10/2018 - Commons Chamber
1: died after suffering a relapse of an aggressive cancer of his central nervous system. Cian was a young - Speech Link
2: each year, accounting for a quarter of all childhood cancer cases. Like the hon. Gentleman, I salute the - Speech Link
3: the brain, but are most commonly found in the cerebellum—the base of the brain—and in the brain stem - Speech Link
5. Oral Answers to Questions
07/05/2019 - Commons Chamber
You may be interested in these active petitions
FOP causes the body’s bone to develop in areas where normally it wouldn't, progressively locking joints in place and making movement difficult or impossible.
Around one in two million have this ultrarare genetic condition!
UK's charity, FOP Friends, supports FOP research at Oxford University. This is hard to maintain. Government funding would provide real hope for FOP children.
Failing to find a cure or treatment means otherwise-healthy children move closer to becoming locked inside a second skeleton, forever.
Provide the hope the rare disease community needs by funding this rare disease research.
Tuesday 12th October 2021
The Government recognises the challenges faced by people affected by rare disease, and funds research into rare conditions – including fibrodysplasia ossificans progressiva – via NIHR and UKRI.
Although rare diseases are individually rare, they are collectively common, affecting 1 in 17 people at some point in their lifetime. The Government recognises the challenges faced by people affected by rare diseases, including ultra-rare conditions such as fibrodysplasia ossificans progressiva (FOP).
In January 2020, the UK Government published the UK Rare Diseases Framework, outlining our vision to improve the lives of those living with rare diseases over the next five years. The Framework describes four key priorities: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments, and drugs. The Framework additionally describes five underpinning themes: patient voice; national and international collaboration; digital, data, and technology; wider policy alignment; and pioneering research.
While the Framework describes our ambitions for rare disease, our forthcoming Action Plan will ensure delivery. Each of the four UK nations have committed to publishing an Action Plan within two years of the Framework’s publication. England’s Action Plan describes work underway across the Department of Health and Social Care (DHSC) and our arm’s-length bodies to address the challenges posed by rare conditions and is expected in early 2022.
Scientific advancements have underpinned many breakthroughs in rare disease. The Government’s 2021 UK Research and Development Roadmap sets out the UK’s vision and ambition for science, innovation, and research.
Alongside other charities and organisations, the Government primarily funds research into rare diseases such as FOP via the National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI).
NIHR is the nation’s largest funder of health and care research, spending £1 billion from DHSC on research every year. In the past five years, the Institute has supported one study into FOP via NIHR Infrastructure and seven studies via NIHR Clinical Research Networks. Bringing together the seven disciplinary research councils, including the Medical Research Council (MRC), UKRI convenes, catalyses, and invests in close collaboration with others to build a thriving, inclusive research and innovation system. Since 2010, MRC have contributed funding towards three projects of underpinning relevance to FOP and the biological processes that contribute towards the condition, totalling over £6.6 million. More broadly, UKRI holds a diverse and dynamic portfolio of research directed towards musculoskeletal health and disease more generally. Findings from this broader pool of projects could stimulate future activity and discovery in FOP research.
NIHR welcomes funding applications for research into any aspect of human health, including FOP. Research proposals in all areas compete for the funding available. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Within NIHR, for all disease areas the amount of funding depends on the volume and quality of scientific activity. The usual practice of NIHR is not to ring-fence funds for expenditure on particular topics. In addition, recognising the impact of rare diseases such as FOP, the MRC Population and Systems Medicine Board supports the UK Rare Diseases Framework by encouraging the scientific community to come forward with their best ideas aimed at addressing research questions related to rare conditions.
Outside of research, the National Institute for Health and Care Excellence (NICE) is in the early stages of developing highly specialised technologies guidance (which make recommendations on the use of new and existing highly specialised medicines and treatments within the NHS in England) on ‘palovarotene for preventing heterotopic ossification associated with FOP (ID3739)’. NICE aims to align publication of its highly specialised technologies guidance as closely as possible with a product receiving UK regulatory approval to ensure patients in the NHS can access new medicines and treatments in a timely manner. NICE cannot publish final guidance until this has been granted. For further information, including timelines for development, please visit www.nice.org.uk/.
Department of Health and Social Care