Dedicate funding for research into Fibrodysplasia Ossificans Progressiva (FOP)
The Parliament petitions site records 111,246 signatures for this petition, which closed on 7 January 2022. The Government responded on 12 October 2021. MPs debated it in Westminster Hall on 6 December 2021.
The petition
The petition's creator is not named in the Petitions site's published record. Quoted in full from the UK Parliament petitions site.
Dedicate funding for research into Fibrodysplasia Ossificans Progressiva (FOP)
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.
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.
The Government's response
The Government published its response on 12 October 2021; the petitions site lists the Department of Health and Social Care as responsible. Its summary:
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.
The opening 395 words of the 653-word response:
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.
Read the full response on the petitions site.
Where the signatures came from
Signatures came from 650 constituencies on the boundaries used until the 2024 general election. The largest number, 2,745, came from Hemel Hempstead.
110,586 of the signatures were from the UK and 660 from elsewhere, by the location signers gave.
| Constituency | Signatures |
|---|---|
| Hemel Hempstead | 2,745 |
| South West Hertfordshire | 722 |
| North Antrim | 658 |
| South West Bedfordshire | 584 |
| Mid Bedfordshire | 511 |
| Watford | 496 |
| St Albans | 475 |
| Brentwood and Ongar | 403 |
| Hertford and Stortford | 395 |
| Hitchin and Harpenden | 392 |
| Region | Signatures |
|---|---|
| East of England | 17,488 |
| South East | 15,375 |
| North West | 10,510 |
| London | 9,003 |
| West Midlands | 8,448 |
| South West | 7,939 |
| East Midlands | 7,138 |
| Scotland | 7,034 |
| Yorkshire and The Humber | 6,673 |
| Wales | 5,111 |
| Northern Ireland | 3,581 |
| North East | 3,548 |
Debate in Parliament
MPs debated the petition in Westminster Hall on 6 December 2021. Read the debate in Hansard. House of Commons Library debate pack.
Source and receipt
- https://petition.parliament.uk/archived/petitions/590405.jsonUK Parliament Petitions API · read 2026-10-15 · SHA-256
6411f35197dfec42… - The petition on petition.parliament.uk
The petition's words are its creator's and the response is the Government's; this site quotes both and gives no view on either. Signature counts can still change while a petition is open. To report an error, send a correction request.