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Online resource centre for primary immunodeficiencies:
Jeffery Modell Foundation – Your online resource centre for primary immunodeficiencies.
Rare Revoltion Magazine – To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. It’s time to turn the tide!
The Primary Immune Deficiency (PID) Treatment Consortium (PIDTC) consists of 42 centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system. The PIDTC helps patients learn about the disorders, connects them with experts in a PIDTC center near them, and provides information on treatment options and research studies. PIDTC also answers questions physicians may have about immune disorders, and offers connections to patient support groups.
Global Genes – Empowering patients, building communities & driving forward momentum for rare disease globally.
IPOPI – International Patient Organisation for Primary Immunodeficiencies. IPOPI is a non-profit international organisation and the leading advocate for primary immunodeficiency (PID) patients worldwide. Dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide through global collaboration.