XLP Research Trust

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Contents 1 Background 2 Website 3 Recommended Sites 4 Links to Other Organizations

[edit] Background

XLP is a rare genetic condition that often causes the need for a bone marrow transplant. Founded in 2005, the XLP Research Trust was started in order to raise international awareness of XLP and fund research on the disorder. The XLP Research Trust supports affected families through a semiannual newsletter and online forum. Generating medical literature and making it available internationally have also been integral to this mission. Recently, they have been able to provide $300k of funding for medical research into XLP, and their efforts resulted in the identification and classification of XLP 2. You may have heard about them on the BBC news, because of their widely publicized triathlon!

[edit] Website

http://www.xlpresearchtrust.org/

[edit] Recommended Sites

[edit] Links to Other Organizations

   * Advocacy Organizations
   * Academic Institutions
   * Biotech Companies
   * Government Agencies
   * Genetic Alliance
   * Laboratories
   * Law/Consulting Firm
   * Patient Registries
   * Policy Organizations/Think Tanks
   * Professional Societies
   * Other