Useful Links

Online Resources For Primary Immunodeficiencies

ImmUnity Canada
ImmUnity Canada is a not-for-profit charitable organization that provides a community for people and families impacted by primary immunodeficiency.
https://immunitycanada.org
Immunodeficiency Canada
Immunodeficiency Canada provides patient support, education, and research for a cure for Primary Immunodeficiency (PI).
https://immunodeficiency.ca
APIQ – Association des Patients Immunodéficients du Québec
The APIQ is a non-profit organization that brings together patients with immune deficiencies as well as their families and health professionals interested in this disease.
https://apiq.info
Canadian Immunocompromised Advocacy Network
Protecting immunocompromised Canadians from COVID-19 and beyond
https://immunocompromised.ca
CORD – Canadian Organization for Rare Disorders
CORD is Canada’s national network for organizations representing all those with rare disorders.
https://www.raredisorders.ca
National Organization for Rare Disorders
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives.
https://rarediseases.org
Global Genes
Find other patients with rare diseases, access information and resources, connect to researchers, and learn to advocate.
https://globalgenes.org
IDF Immune Deficiency Foundation
Learn about primary immunodeficiencies, treatments, awareness, and advocacy. Connect with other patients and caregivers to share your experiences.
https://primaryimmune.org
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
Jeffery Modell Foundation
Access patient friendly e-books and other information about primary immunodeficiencies. Connect with other patients and caregivers.
https://info4pi.org

Genetic Counselors

Genome
Provides genetic counseling services. Learn what you can expect from genetic counseling and how genetic counselors can help you.
https://www.genomemedical.com

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Medical genetic testing experts:

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

Genetic counselors:

Genome – Provide genetic counseling services. Learn what you can expect from genetic counseling and how genetic counselors can help you.
https://www.genomemedical.com/

Clinical Trials:

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. It is a resource provided by the U.S. National Library of Medicine.
clinicaltrials.gov

Online resource center for primary immunodeficiencies:

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

IDF Immune Deficiency Foundation – Learn about primary immunodeficiencies, treatments, awareness, and advocacy.Connect with other patients and caregivers to share your experiences.
primaryimmune.org/resource-center

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.
ipopi.org

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

National Organization for Rare Disorders – NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives.
https://rarediseases.org/rare-diseases/activated-phosphoinositide-3-kinase-delta-syndrome-apds/

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

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