Supporting X-Linked Lymphoproliferative Syndrome families and funding research into XLP1 and XIAP.Find Out More
X-linked lymphoproliferative syndrome (XLP), are rare potentially fatal genetic diseases that affects only boys. To date only about 180 families and 700+ boys have been diagnosed worldwide.
It is likely, however, that there are many more cases where the correct diagnosis has not been made.
XLP can have many symptoms including: severe glandular fever, cancer of the blood (lymphoma), inability to fight off infections, and sometimes severe anaemia. 70% of individuals with XLP1 die by the age of 10 years without any treatment. XLP was first observed in 1969 but the cause of the XLP1 was only found in 1998, and research into XIAP is in its infancy, so there is still a lot to learn.
The best ‘prevention’ is regular top ups of anti-viral medicines, immunoglobulin therapy or steroids – but these are not a cure. Today the only possible cure is a bone marrow or stem cell transplant – in effect replacing the faulty immune system.
For XLP1 we are now very close to being able to use gene therapy.
Founded in 2005, we exist to:
The XLP Research Trust depends entirely on voluntary donations to fund our work.
Please make a donation today.