While information about SCID can be found on the SCID Compass website, and other web and printed materials, there is nothing that compares to meeting other families who have children with SCID. Relationships between families provide everyone with more information, a forum to ask questions, emotional support, and a place to share frustrations, as well as victories.
The SCID Compass program is under the umbrella of the Immune Deficiency Foundation, which serves as a hub of information for thousands of people living with primary immune diseases including SCID. Support groups are available for various immune diseases. Below is a list of groups and resources that can provide opportunities to network with other families who have experience with SCID.
Immune Deficiency Foundation (IDF)
IDF is a non-profit patient organization dedicated to serving people with primary immunodeficiency diseases, or PI. It is also the parent organization for the SCID Compass program. IDF offers one-to-one peer support and Get Connected groups, open to all people with PI. In addition to access to support groups, IDF offers resources related to education, advocacy and research for people living with primary immunodeficiency diseases, including SCID.
SCID, Angels for Life
SCID, Angels for Life is a non-profit support and resource group specifically designed for parents of children with SCID. The organization offers general information about SCID and topics related to SCID. In addition, the organization runs a support group at the University of California, San Francisco for parents and caregivers of children with SCID. The monthly group is designed to support newly diagnosed families and to provide them with information and hope for the future.
Additional SCID Resources
Primary Immune Deficiency Treatment Consortium (PIDTC)
PIDTC is a network of medical professionals from more than 40 centers whose goal is to improve outcomes of patients with rare, life-threatening, inherited disorders of the immune system. Information on SCID, hematopoietic stem cell transplant therapy, gene therapy and PEG-ADA enzyme replacement therapy can be found on the organization’s website at https://www.rarediseasesnetwork.org/cms/pidtc/.
National Institute of Health (NIH) Genetic and Rare Diseases Information Center (GARD)
The National Institute of Health’s Genetic and Rare Diseases Information Center offers general information on SCID, as well as specific information about SCID types, and can be found at http://rarediseases.info.nih.gov/.
Newborn Screening and Technical assistance and Evaluation Program (NewSTEPS)
NewSTEPS is a national newborn screening resource center that offers data and other information for parents of children with SCID. NewSTEPS can be found on the web at www.newsteps.org.
Genetic Alliance is a non-profit dedicated to bringing together thousands of organizations and individuals with the goal of providing awareness, education and advocacy for diseases, including primary immunodeficiency diseases. Genetic Alliance may be reached at www.geneticalliance.org or by phone at 800-336-GENE. Parents may also want to visit www.diseaseinfosearch.org, a disease information guide affiliated with Genetic Alliance.
Baby’s First Test
Baby’s First Test offers information on newborn screening, genetic conditions, specialists, and insurance. Baby’s First Test is a program under the umbrella of Genetic Alliance and can be reached at www.babysfirsttest.org.
National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization for people with rare diseases and organizations which serve them. To reach NORD, visit www.rarediseases.org.
National Coordinating Center for the Regional Genetics Network (NCC)
NCC provides seven Regional Genetics Networks spread throughout the U.S. which serve to improve access to genetic services to the medically underserved populations. To learn more, visit www.nccrcg.org.
SCID.net is an informational website about SCID and topics related to SCID, along with opportunities to join an e-mail group related to SCID. To learn more, visit www.scid.net.