Services provided:
- 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.
Additional information:
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 plus 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 die by the age of 10 years without any treatment. The cause of the conditions was only found in 1998, so there is still a lot to learn.
Address
60 Winchester Road
Romsey
Hampshire
SO51 8JA
Phone: 01794 521 077
Website: http://www.xlpresearchtrust.org/
Email: info@xlpresearchtrust.org
