X-linked lymphoproliferative syndrome (XLP), which is also known as Duncan’s syndrome, is a rare always fatal disease that affects only boys. To date only about 100 families and 400+ 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) and inability to fight off infections and sometimes severe anaemia. 70% of individuals with XLP die by the age of 10 years without any treatment. The cause of the condition was only found in 1998 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 transplant – in effect replacing the faulty immune system.

However with advances in genetics a potential cure may now only be a few years away.

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Founded in 2005, the XLP Research Trust exists to

  • Promote and fund research into the cause, management, symptoms and cure for XLP
  • Provide a point of contact and support for those families affected by XLP
  • Raise the awareness of XLP amongst the medical profession and the general public

XLP WAS 2014 Symposium