The following are some useful links for further information or research.

Becoming a bone marrow donor

If you are eligible please become a potential bone marrow donor. This is currently the only cure for XLP and many other diseases.

www.deleteboodcancer.org.uk
www.anthonynolan.org
www.bethematch.org
www.zkrd.de
www.fgm.fr
www.ibmdr.galliera.it
www.jmdp.or.jp
www.onematch.ca
www.abmdr.org.au
www.sabmr.co.za
www.fcarreras.org
www.tobiasregistret.se
www.europdonor.nl
www.hpcregistry.com
www.giveblood.ie/bonemarrow
www.mdpb.be
www.bonemarrow.org.nz
Rest of the world www.bmdw.org/index.php?id=addresses

Genetic testing service

Correlagen Diagnostics (USA)

Cincinnati Children’s Hospital (USA) – Center for Heritable Immunodeficiencies

Centogene Gmbh (Germany) – Institute of Molecular Diagnostics


Other Useful links

Primary Immunodeficiency UK
Primary Immunodeficiency UK (PID UK) is an organisation supporting individuals and families affected by a primary immunodeficiency in the UK.

UK Primary Immunodeficiency Network
UK Primary Immunodeficiency Network (UKPIN) is a multidisciplinary organisation of those caring for patients with primary immunodeficiencies. UKPIN aims to share methods of best practice, and to accredit immunology centres which practice in this way.

Immune Deficiency Foundation (IDF) - www.primaryimmune.org
The Immune Deficiency Foundation (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.

The Genetics Society - www.genetics.org.uk
The Genetics Society is a `learned society' whose membership of over 2,000 consists of most of the UK's active professional geneticists, including teachers, researchers and students. Industry and publishing are also well represented in our membership.

National Primary Immunodeficiency ResourceCenter - www.info4pi.org
The US based National Primary Immunodeficiency ResourceCenter is a mine of useful information on all Primary Immunodeficiencies

 

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