SCID Compass –

Other Non-Profit National Patient Organizations for immunodeficiency disorders:

Immune Deficiency Foundation – IDF –

Jeffrey Modell Foundation – JMF –

Newborn Screening:

Advisory Committee on Heritable Disorders in Newborns and Children –

Associated Public Health Lab – APHL –

Babies First Test – 

Centers for Disease Control and Prevention – CDC –

National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaborative – NCCRCG –

Newborn Screening Translational Research Network – NBSTRN –


Primary Immune Deficiency Treatment Consortium Network  – PIDTC –

Save Babies Through Screening Foundation –  

State Map & Contact Source for newborn screening –

Become a Bone Marrow Donor:

Be the Match –


Cord Blood Banking:

The Cord Blood Center –

 SCID Family Internet Support Group:

Barb Ballard’s SCID Email Group –

Other Useful Links:

Clinical Trials – 

Children’s Organ Transplant Association

National Institutes of Health (NIH) –

National Organization of Rare Disorders (NORD)

National Center for Advancing Translational Sciences (NCATS)

Rare Diseases Clinical Research Network (RDCRN)

Transportation for patients who are in financial need and cannot afford the cost of air travel.  

Mercy Medical Angels

Root and Wings –