The XLP Research Trust

The XLP Research Trust

Charity information

The XLP Research Trust

To have one child with a life taking condition is bad enough, but to have multiple brothers and cousins with such a condition is absolutely devastating.

X-Linked Lymphoproliferative Syndrome (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 – in effect replacing the faulty immune system. But only 30% of XLP sufferers can find a suitable bone marrow donor, so for the charity one of its key roles is to promote and fund medical research into the cause, management and potential cure for the disease. The charity also acts as a support group for XLP affected families across the world.

Founded 2005

  • Second round of medical research grants....

    To fund important medical research projects into this life taking condition.
  • Translation Project

    Finding out your son or sons have a life taking medical research condition is one of the h... More