Margot James takes the opportunity of a Parliamentary debate on a rare disease strategy for the UK to highlight the difficulties facing low-profile diseases in need of research and funding. She especially mentions fibrodysplasia ossificans progressiva (FOP) as she has recently become Patron of FOP Action.
Margot James (Stourbridge) (Con): I congratulate my hon. Friend on this very important debate. Does he agree that some rare diseases at least have a high profile, which is advantageous in garnering research and funding? I should like to draw his and the Minister’s attention to a rare disease that has a very low profile—FOP, or fibrodysplasia ossificans progressiva, which is a tragic condition where bone grows in muscle. The funding and research that is required for this condition is set back due to its low profile. Will my hon. Friend join me in wishing to raise the profile of this rare condition and many others with such a low profile?
Mr Timpson: My hon. Friend has done just that. I know that she has recently become patron of the charity FOP Action. I believe that this disease affects only one in 2 million people. I congratulate her on taking up that task and wish her and the charity well in raising awareness and the profile of that disease so that even the very small number of people who are affected by it receive the best possible care and support throughout their lives.