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.

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.