Immune Deficiency Foundation launches website supporting parents of babies with SCID, a rare life-threatening disorder

TOWSON, Md., Dec. 10, 2019 /PRNewswire/ -- The Immune Deficiency Foundation (IDF), a national organization for people with primary immunodeficiency (PI), announces the launch of a new website designed to support parents of babies diagnosed with severe combined immunodeficiency (SCID), a rare genetic condition that is fatal if not treated within the first year of life.

The site, www.scidcompass.org, offers parents an in-depth explanation of SCID; detailed information on treatment options; advice on how to care for their child after treatment; and access to support systems where they can meet other families.

The website is part of a broader project, the SCID Compass Program, funded by a two-year grant from the U.S. Health Resources and Services Administration (HRSA). The goal of SCID Compass is to improve outcomes for infants with SCID by:

• increasing awareness and knowledge about SCID
• linking families, especially those living in medically underserved areas, to services
• developing long-term follow-up strategies for infants identified through newborn screening

To develop and evaluate the family-centered website, IDF partnered with parents of children with SCID, grassroots support groups, and healthcare professionals with decades of experience working with families affected by SCID. Other partners included the Association of Public Health Laboratories (APHL), a professional association responsible for supporting newborn screening programs; the Genetic Alliance, a health advocacy organization; and RTI International, a non- profit research organization. IDF consulted with parents to build and review website content, employed the expertise of physicians in the writing and editing process, and utilized communication science teams to shape the website's core architecture.

"Scidcompass.org is truly a product of teamwork and is presented in an accessible format that we hope parents will find clear, engaging and helpful as they navigate their journey living with SCID," said Heather Smith, Chairperson of the SCID Compass Steering Committee and President of SCID, Angels for Life, a non-profit support group for parents of children with SCID, which works closely with IDF.

The launch of the website coincides with the one-year anniversary of all 50 states implementing screening for SCID in their newborn screening protocols. IDF, along with dedicated volunteers and partner organizations, lobbied lawmakers for 10 years to include SCID on the newborn screening panel and celebrated success in December 2018 when policy was approved requiring nationwide universal screening for SCID.

"The website is a natural next step now that newborn screening for SCID is implemented in the U.S. Now, more than ever, babies are being screened, diagnosed and treated for SCID. That means a probable increase in the number of SCID cases and a greater need for information," said John G. Boyle, President and CEO of the Immune Deficiency Foundation.

"The website delivers a much-needed place for parents to not only educate themselves on this rare and life-threatening disorder, but also find a sense of comfort as they connect with others who have similar experiences."

About SCID

A baby with SCID is born with a severely compromised immune system. The condition is caused by a genetic disorder which results in a lack of T cells in the body. T cells are key to activating the immune system. With no ability to launch an immune response, the baby is highly susceptible to germs of any type — bacteria, virus, fungi — and can quickly develop infections. Life-saving treatment in the form of bone marrow transplant or gene therapy administered within the first few months after a baby is born is essential. The disorder is rare — roughly 1 in 57,000 children are born with it annually, or about 76 cases in the U.S. each year. As a result of major advancements in treatments and early identification through newborn screening, babies born with SCID have over a 90 percent survival rate if they undergo treatment during infancy.

Many people are familiar with SCID thanks to David Vetter, affectionately known as "the boy in the plastic bubble." Born in 1971, David lived in an enclosed plastic area designed to protect him from germs. David died at age 12, but his life helped provide scientists with a deeper understanding of SCID and how best to treat the disorder.

About IDF

Founded in 1980, the Immune Deficiency Foundation (IDF) improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency through fostering a community empowered by advocacy, education, and research.

There are approximately 250,000 people who are diagnosed with a primary immunodeficiency disease (PI) in the U.S. These individuals often find it difficult to receive specialized healthcare, proper diagnosis and treatment. Individuals affected by PI also experience difficulties financing their healthcare, finding educational materials on the disease and locating others with whom to share their experiences. IDF helps individuals overcome these difficulties so they can live healthy and productive lives. The constant presence of IDF assures patients, their families, and their medical caretakers that there is a place to turn for help.

HRSA Acknowledgement/Disclaimer: This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $4 million with 0% financed with nongovernmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.

SOURCE The Immune Deficiency Foundation