April is National Primary Immunodeficiency Awareness Month. Primary Immunodeficiency Diseases (PIDD) are a group of more than 4001 rare, hereditary conditions characterized by the absence or malfunction of cells or proteins required by the immune system to function properly. There are approximately 500,000 people in the U.S. living with PIDD.2 Here we spotlight three organizations dedicated to advancing PIDD research, treatment, and education and how you can get involved.
1. Immune Deficiency Foundation (IDF)
Immune Deficiency Foundation (IDF) is dedicated to PIDD advocacy, education, and research in order to improve the diagnosis, treatment, and quality of life of those affected. IDF provides education and networking via online resources, in-person events, and virtual events. IDF also has nationwide volunteers serving as peer support, educational meeting hosts, public policy advocates, and fundraiser organizers. To learn more about IDF, volunteering, and/or additional ways to get involved, visit their website here.
2. Jeffrey Modell Foundation
The Jeffrey Modell Foundation helps people with PIDD find answers about their diagnosis, find expert Immunologists, and connect with other PIDD patients and their families/caregivers. The Jeffrey Modell Foundation has named and funded 150 Jeffrey Modell Diagnostic and Research Centers. It has a network of 821 Expert Physicians while spanning and serving 379 academic teaching hospitals, 294 cities, 86 countries, and 6 continents. Learn more about how this organization continues to drive for a cure as well as how you can participate here.
3. The American Academy of Allergy, Asthma & Immunology (AAAAI)
The American Academy of Allergy, Asthma & Immunology (AAAAI) is a professional membership organization of more than 7,000 allergists / immunologists globally. It's also a patient resource for patients with allergies, asthma, and immune deficiency disorders. Specific to PIDD, AAAAI provides online educational resources on the types of PIDDS, research, and treatment. You can also find local Immunologists through their online database. Learn more about AAAI including its available resources and becoming a member here.
BioMatrix helps prevent infections from PIDD so you can live your best life. Together, our clinicians, support staff, and digital health technology offer a comprehensive approach improving quality of life for patients and producing positive outcomes along the entire healthcare continuum.
DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.
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References
https://primaryimmune.org/about-primary-immunodeficiencies
https://www.niaid.nih.gov/diseases-conditions/primary-immune-deficiency-diseases-pidds
