XLP Research Trusts
Funding Profiles
Access available for Technion staff. Please sign in to see the Agency profiles (upper left corner)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.
Contact information:
The XLP Research Trust
60 Winchester Road
Romsey
Hampshire
SO51 8JA
United Kingdom
Tel: +44 (0)1794 521077
Registered Charity No: 1111075
Please note that the phone is only occasionally manned but does have a 24 hour messaging service.
The fund is not a competitive fund
web site: http://www.xlpresearchtrust.org/default.asp