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Useful Links

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Receive communications regarding clinical trials, APDS, and treatment:

Pharming – Stay updated with the latest information about APDS by registering here.
pharmingapds.com

To learn more about Pharming, visit pharming.com

Medical genetic testing experts:

Invitae Genetic Testing – Learn more about genetic testing.
invitae.com/en/

Genetic counselors:

Gene Matters – Provide genetic counseling services. Learn what you can expect from genetic counseling and how genetic counselors can help you.

https://www.gene-matters.com/for-patients-what-to-expect-from-genetic-counseling-understand-genetic-testing

Online resource center for primary immunodeficiencies:

Jeffery Modell FoundationAccess patient friendly e-books and other information about primary immunodeficiencies, find doctors and connect with other patients and caregivers.
info4pi.org/

IDF Immune Foundation – Learn about primary immunodeficiencies, treatments, awareness, and advocacy.
Connect with other patients and caregivers to share your experiences.

primaryimmune.org/resource-center

Global Genes – Find other patients with rare diseases, access information and resources, connect to researchers, and learn to advocate.
globalgenes.org/

Rare Revolution – Hear from other people affected by rare diseases about their experiences and the groups that support them.

rarerevolutionmagazine.com/

The Primary Immune Deficiency 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.
rarediseasesnetwork.org/cms/pidtc/

IPOPI – International Patient Organisation for Primary Immunodeficiencies. IPOPI is a non-profit international organisation and the leading advocate for primary immunodeficiency patients worldwide. Dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide through global collaboration.
https://ipopi.org

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