Patients, families and healthcare providers rely on IDF for quality educational materials that focus on understanding and treatment of primary immunodeficiency diseases. With the increasing prevalence of newborn screening for SCID throughout the country, IDF saw a need for guides that explained the meaning of an abnormal screen for SCID and a diagnosis of SCID, and those publications are now available in Spanish.
The two guides for parents have been developed by IDF and medical experts in SCID with the help of the New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC). The brief one page guide for abnormal screens is designed as an online resource with editable text fields so that states can include their own relevant contact information. Similarly, the guide for parents who learn that their child has a definitive diagnosis of SCID is available online and as a printed version. This guide includes space on the back allowing states to add their own information.
These publications are utilized throughout the country to supplement the follow up procedures in states that are screening newborns for SCID. Following mounting requests, IDF is proud to introduce Spanish language versions of these materials!
Both the English and Spanish versions of the guides can be ordered on the publications page of the IDF website: http://primaryimmune.org/about-primary-immunodeficiency-diseases/idf-publications.