The SCID Homepage  

 

SCID, Severe Combined Immunodeficiency, is a primary immune deficiency. The defining characteristic is usually a severe defect in both the T- & B-lymphocyte systems. This usually results in the onset of one or more serious infections within the first few months of life. These infections are usually serious, and may even be life threatening, they may include pneumonia, meningitis or bloodstream infections.

About
What is SCID?

Newborn Screening learn more about the importance of early detection and why there needs to be universal newborn screening for SCID.

SCID Links
SCID and PID specific links. Info on the immune system and more

SCID Initiative
Learn about the dedicated fund created to promote education, awareness, diagnosis, newborn screening, and the search for a cure.

Email Listserv
Find out about the SCID Email Listserv Support Group

IVIG & GVHD
IVIG, GVHD, and other sites of interest
Email Listserv
Find out about the SCID Email Listserv Support Group

Foundations & Associations
Foundations & organizations for patients along with associations for physicians

Research Areas
Research sites and Periodicals

Reciprocal Links, Webrings & Awards
Links to reciprocal sites, webrings, and awards

Foundations & Associations
Foundations & organizations for patients along with associations for physicians

How You Can Help

 

"This once-fatal disease should be now seen as a pediatric emergency, a condition that needs immediate diagnosis and treatment. says Dr. Rebecca Buckley, chief of Duke's division of pediatric allergy and immunology. "Early diagnosis of SCID is rare because doctors do not routinely perform a test in newborns to count white blood cells. Such a blood test could pick up children with SCID as well as those with other serious immune deficiencies that would not be apparent until the child developed an infection. A simple blood test could allow us to treat, and most likely cure, SCID in an infant at a reasonable cost. If found later, less effective treatment can run into the millions." Buckley states, "What we're saying is that essentially every baby with SCID could be cured if diagnosed early enough. SCID should be considered a pediatric emergency."

SCID is often called "bubble boy disease". SCID became widely known during the 1970's and 80's, when the world learned of David Vetter, a boy with X-linked SCID, who lived for 12 years in a plastic, germ-free bubble.

There are several forms of SCID. The most common type is linked to the X chromosome, making this form affect only males. Other forms of SCID usually follow an autosomal recessive inheritance pattern or are the result of spontaneous mutations. One of these other forms is linked to a deficiency of the enzyme adenosine deaminase (ADA). Other cases of SCID are caused by a variety of other defects.

SCID Conference 2008!
It’s been 10 years since the X-SCID Conference held in Bethesda, Maryland. Now plans are underway for another conference. Registration will open at the beginning of May, but to find out what’s planned visit the SCID Conference 2008 website. The SCID Conferences are for SCID patients and their families. Sign up for updates or check the site often for the latest information. Dates and location have already been announced: July 25th to 27th, 2008 at Wintergreen Resort and Spa in Wintergreen, Virginia.

 

Intravenous Immune Globulin (IVIG) Communities Unite to Pursue Medicare Reform on Behalf of Patients
Galvanized summit group forms to resolve life-threatening IVIG access issues associated with Medicare Modernization Act. To ensure both short-term and longer-term solutions to reimbursement rates for IVIG, a summit group for reimbursement reform has been created, guided by patient insights from the Immune Deficiency Foundation (IDF), the Jeffrey Modell Foundation (JMF), and The Neuropathy Association (TNA).

The Immune Deficiency Foundation public policy program focus on three main areas:

  • Advocating for a safe and adequate blood supply
  • Ensuring access to quality health care for primary immune deficient patients
  • Increasing funding for medical and scientific research.

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