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.
In the midst of the coronavirus pandemic, the Association of Public Health Laboratories (APHL) is assisting state health labs with how best to adapt the process of sharing results of newborn screening tests with parents. Newborn screening is essential for early diagnosis of severe combined immunodeficiency (SCID), a primary immunodeficiency that can be fatal if not diagnosed within the first year of life.
While labs continue to process newborn screening tests, the newborn screening community is currently facing several challenges related to COVID-19. APHL recently convened a group of short-term follow-up newborn screening staff to discuss obstacles they are facing as they try to share newborn screening test results. These challenges include staffing shortages, adjusting to remote work, closures of outpatient clinics and doctor offices, decreases in medical staff, parents’ concerns about bringing their children into medical facilities, and limited courier deliveries.
In the coming weeks and months, APHL will work with members of the newborn screening community to strategize about developing guidelines and best practices as they relate to navigating through these challenging times.
For additional information on newborn screening, visit the APHL’s NewSTEPs program, the Genetic Alliance’s Expecting Health program, or the Immune Deficiency Foundation’s SCID Compass program.
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