The following are some useful links for further information or research.
If you are eligible please become a potential stem cell donor (also known as 'bone marrow donor'). This is currently the only cure for XLP and many other diseases. Today there are over 40,000 new people globally needing a suitable donor for conditions like XLP and blood cancers (lymphoma).
Find where to donate stem cells in your country using the WMDA Share database:
XLP1
XIAP/XLP2
XLP - XLP1, XIAP & XMEN
IPOPI - member organisations
The International Patient Organisation for Primary Immunodeficiencies is a global organisation working to improve the quality of life for people with primary immunodeficiencies. The link above goes to a list of their member organisations arranged by country.
Immunodeficiency UK
Immunodeficiency UK is a national patient organisation for individuals and families in the UK with primary and secondary immunodeficiency.
British Society for Immunology
The BSI's mission is to support our immunology community in driving scientific discovery and making a positive impact on health.
Immune Deficiency Foundation (USA)
The IDF is the USA non-profit health organization dedicated to improving the diagnosis and treatment of primary immune deficiency diseases through research and education.
Genetic Alliance UK
Genetic Alliance UK is the UK’s national charity working to improve the lives of patients and families affected by all types of genetic conditions. We are an alliance of over 180 patient organisations. Our aim is to ensure that high quality services, information and support are provided to all. We actively support research and innovation across the field of genetic medicine.
Genetic Alliance (USA)
Genetic Alliance is one of the world’s leading nonprofit health advocacy organizations. We engage individuals, families, and communities to transform health. Trying to find information and interventions for disease, searching for health information, and/or trying to find ways to participate in research is difficult. We create ways to make it easier to find or build solutions in health services and research.
Jeffrey Modell Foundation
JMF is a global nonprofit dedicated to early diagnosis, treatments, and ultimately, future cures for Primary Immunodeficiencies through awareness, advocacy, and research.
National Human Genome Research Institute - Gene Therapy
This is a very useful site to better understand this emerging alternative for a wide number of conditions. We are expecting that gene therapy will be available for XLP1 boys in the near term and work has commenced on developing gene therapy for XIAP.
Global Genes
This US based nonprofit has provided some excellent Toolkits for people affected by a rare disease in the US - including family planning, accessing social security benefits and genetic counselling.
