Fibrodysplasia Ossificans Progressiva

Pays tribute to colleagues for raising awareness about fibrodysplasia ossificans progressiva (FOP). Mentions that while his constituents do not have FOP, 584 signed a petition on the issue. Notes that despite being rare, FOP matters immensely as each individual affected deserves attention. Discusses the palovarotene trial and its encouraging results for reducing new heterotopic ossification volume in 62% of participants. Praises the rare diseases framework published by the Government this January, highlighting patient voice, national and international collaboration, digital technology, wider policy alignment, and research as underpinning themes. I just want to take the Minister back to a point she made a moment ago about the trials for new drugs being limited to a very small number of people because FOP is a rare disease. I wonder what the solution to that is. Do we try to get people with FOP all around the world to participate in a trial? There were 107 in the trial that I mentioned, which I presume is too small.

Acknowledges the importance of the debate on FOP, thanks petitioners including those from her constituency. Emphasises the need for more funding and international co-operation in research. Highlights the potential broader medical benefits of finding a cure for FOP beyond just helping those with the disease. Supports the UK rare diseases framework's aims to improve diagnosis and patient care.

The MP highlighted the significant public support for addressing FOP, noting that more than 111,000 people had signed a petition. She praised contributions from MPs and constituents, emphasising the lack of funding and need for awareness. The MP expressed concern over the low number of specialist clinicians available to diagnose FOP and called on the Minister to ensure that genetic tests are included in NHS genomic medicine service updates next April.

Mr. Paisley thanked the Chair and congratulated the mover of the motion, highlighting the significance of the debate on Fibrodysplasia Ossificans Progressiva despite its rarity. He noted that his constituency has the largest petitioning group in Northern Ireland with 658 signatories, yet only two cases are known. Mr. Paisley stressed the importance of raising awareness and called for increased government support to direct resources towards FOP research.

He thanked Elliot Colburn for leading the debate and highlighted Oliver's case, noting the rarity of FOP. He praised Chris, Oliver's father, and his family's resilience. Mike also commended Sale High School for providing Oliver with independence and support. He emphasised the importance of FOP Friends charity in securing funding for research into FOP and its potential implications on other bone conditions. Finally, he requested more action to help those diagnosed with rare diseases feel supported.

He stated briefly that he will hold the speaker to their commitment. Mr Penning highlighted the rarity and devastating impact of FOP, noting that it removes children's chance for a normal childhood. He mentioned how difficult diagnosis can be due to medical professionals' lack of experience with FOP. The research is currently being funded by charity in Oxford University, but Mr Penning urged the government to provide financial support to progress understanding and treatment of the condition. Intervenes to correct that all funding for FOP research comes from fundraising by FOP Friends. Also stresses the urgency of addressing FOP in children, noting that waiting two years is too long given the life-threatening nature of the disease. Intervenes briefly, noting that many people think trauma triggers FOP when in fact it can develop without any obvious cause. Emphasises the importance of research into this condition. The right hon. Member corrected a previous statement, asserting that there is no evidence to suggest FOP is hereditary; instead, he stated that the gene affected at conception causes it. The Minister has taken the words right out of my mouth. Will she and specialist civil servants in her Department meet the campaigners? Not a huge group—just a few people to come together to work out how they can get access and make a successful bid so that the children can get the help that they need? There is a lot of praise going around this House for the MP for Hemel Hempstead. However, Alex and Dave Robins are the reason that my constituents have signed the petition the most. They deserve the praise—not the MP for Hemel Hempstead.