XLP is a rare, always fatal inherited disease that only affects boys. 70% of boys with XLP die by the age of 10 years without treatment. Today the only possible cure is a bone marrow transplant -replacing the faulty immune system. But only 70% of XLP boys can find a suitable donor, so for the charity its key role is to promote and fund medical research. The charity acts as a support group for XLP affected families globally.