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 –

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 –


SCID Family Internet Support Group:

Barb Ballards SCID Group –


Cord Blood Banking:

The Cord Blood Center –


Useful Links:

Childrens Organ Transplant Association –

National Institutes of Health -NIH –

National Organization of Rare Disorders – NORD –

Office of Rare Diseases Research, NIH –

Rare Diseases Clinical Research Network

Transportation for patients who are in financial need and cannot afford the cost of air travel.  For more information go to

Medical Journals, Articles and Other Media Outlets Displaying Taylor’s Story:


Reader’s Digest – readers-digest-scan0001

Children’s Hospital of Michigan Cover Story – childrens-hosp-of-miscan0001

Smithsonian Institute –

Associated Press – associated-pressscan0001