14. To ask the Scottish Government what support it provides for people and their families living with fibrodysplasia ossificans progressiva. (S4O-03714)

I acknowledge the devastating effects on individuals and families of the very rare disease fibrodysplasia ossificans progressiva, which is often called FOP.

The combined bone clinic at Yorkhill hospital in Glasgow provides support for children with FOP through a multidisciplinary team of specialist physicians, geneticists, occupational therapists and an orthopaedic surgeon.

Does the Minister agree that FOP is one of the rarest and most disabling genetic conditions known to medicine? It causes bone to form in muscles, tendons, ligaments and other connective tissue. It progressively restricts movement and, in effect, imprisons a person in their body’s bone.

I have a family in my Constituency with a member who is badly affected by FOP. The family seeks help through the open market shared equity scheme or any other scheme that might be available to improve the quality of their housing. Will the minister agree to my meeting an appropriate official to discuss how we might best address the family’s needs, not to help the condition to be cured but to ensure that their quality of life is significantly improved?

Bruce Crawford is correct to highlight the challenging nature of the condition, its progressive nature and how it can increasingly result in the loss of someone’s mobility. He is also correct to highlight the open market shared equity scheme, which we developed for people on low to medium incomes to be able to access house ownership. It has as a particular priority those who have a disability, are social renters or are members of the armed forces, including veterans.

I am more than happy to ensure that the member is able to meet a group of our officials who can assist him in considering his constituents’ case to see what assistance can be provided to them.