The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Severe Combined Immunodeficiency (SCID) is one of the most severe forms of primary immunodeficiency (PI). Affected infants appear healthy at birth, but the diagnosis can be fatal without early detection. Screening all children born in the U.S. for SCID is now required in all 50 states, but many families may wonder what happens after diagnosis? Learn more about these rare diagnoses by watching two IDF webinars about SCID from the perspectives of a parent and a physician.
In the first of two webinars, Nicole, the mother of a son diagnosed with SCID detected through newborn screening, explains her family’s experience while answering questions and offering advice to other families facing similar challenges. Click here to view the webinar.
Next, Donald Kohn, MD, Professor of Microbiology, Immunology and Molecular Genetics and Pediatrics at The University of California, Los Angeles (UCLA) leads IDF’s second webinar to discuss background information and treatment options for ADA-SCID, a type of SCID caused by mutations in a gene that encodes an enzyme called adenosine deaminase (ADA). Click here to watch the webinar featuring Dr. Kohn.
These webinars were supported by Leadiant Biosciences.
This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
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