SCID Compass – An Educational Program of the Immune Deficiency Foundation
SCID Compass, an educational program of the Immune Deficiency Foundation (IDF), seeks to improve outcomes for infants with Severe Combined Immunodeficiency (SCID) by enhancing access to and use of educational resources, providing linkages to critical services for patients and families, and developing protocols and mechanisms for long-term follow
Read MoreFinding Solutions to the Global Plasma Paradox: Plasma Donors Are Lifesavers
By: John G. Boyle, President & CEO This past weekend, the New York Times published an opinion piece in its ‘News Analysis’ section titled ‘What is the Blood of a Poor Person Worth?’ that examined the practice of compensating source plasma donors. For the primary immunodeficiency (PI) community, this was yet another article that—while
Read MoreTwo New Webinars Offer Families Insight on Severe Combined Immunodeficiency
Severe Combined Immunodeficiency (SCID) is one of the most severe forms of primary immunodeficiency diseases (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
Read MoreWhy Do We Love to Walk for PI?
One of the questions we asked in the IDF Walk for Primary Immunodeficiency 2018 survey was, “What was your favorite part of the walk?” We really enjoyed reading through all of the responses and wanted to share a few of our favorites. “Meeting other zebras.” “Learning about other treatments.” “It felt great doing some fundraising for myself.” “
Read MoreOne Family’s Experience Participating in IDF Research
Check out a new IDF video filmed entirely in Spanish! As the parents of a child living with PI, Carolina and Mauricio explain in this video that further research is needed to improve the diagnosis, treatment and quality of life for current and future generations living with PI, including their young son and others in the community. Watch as
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