![]() The Immune Deficiency Foundation (IDF) is the national nonprofit patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. SCID Compass is a program comprised of a partnership between the Immune Deficiency Foundation, the Association of Public Health Laboratories, and RTI International. The vision is for SCID Compass to serve as a hub of information and resources for parents, caregivers, and healthcare professionals as they navigate next steps after a positive TREC-screening for SCID.Ĭlick here to read the press release. The goals of the project are to increase awareness and knowledge about SCID and newborn screening for SCID among parents, families, health care providers, and public health professionals provide education, training, and support for newborn screening programs educate families with children diagnosed with SCID (especially those in rural and underserved areas) and link them to clinical and other care services and work to improve clinical care through education and training for providers caring for individuals with SCID. SCID Compass, a two-year, HRSA-funded program, seeks to improve outcomes for infants with 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-up for infants identified with SCID through newborn screening. ![]() This condition is generally considered to be the most serious of the primary immunodeficiencies. Without treatment, infants with SCID typically do not live more than one to two years. ![]() ![]() Patients affected with SCID are highly susceptible to severe and recurrent infections. There are at least 20 different genetic defects that can cause SCID. Severe Combined Immune Deficiency (SCID, pronounced "skid") is a life-threatening primary immunodeficiency (PI) in which there is combined absence of T cell and B cell function. ![]()
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