I was pleased to lead a debate on Fibrodysplasia Ossificans Progressiva (FOP) this afternoon, on behalf of the Petitions Committee.
The debate considered e-petition 590405 entitled “Dedicate funding for research into Fibrodysplasia Ossificans Progressiva (FOP)" and was created by the Bedford-Gay family, whose son Oliver was diagnosed with FOP at 1 years old.
FOP is a rare, genetic, degenerative condition that 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.
Eventually, those with the condition will become 100% immobile - a human statue, a healthy mind locked inside a frozen body.
It is one of the most debilitating and disabling conditions known to affect children in their early years with no treatment, cure, or prevention.
An application has been made to include FOP as part of the rollout of the NHS Genomics Medicines Service, which is funded by NHS England and allows a wider range of clinicians to request a test if they suspect FOP. I raised this on behalf of petitioners and campaigners with the Minister, the full extent to which you can watch above.