Links

Other Non Profit National Patient Organizations for immunodeficiency disorders:

Immune Deficiency Foundation – IDF – http://www.primaryimmune.org

Jeffrey Modell Foundation – JMF – http://www.jmfworld.com

 

Newborn Screening:

Advisory Committee on Heritable Disorders in Newborns and Children – http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/index.htmlhttp://genes-r-us.uthscsa.edu/

Associated Public Health Lab – APHL – http://www.aphl.org

Centers for Disease Control and Prevention – CDC – http://www.cdc.gov

National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaborative – NCCRCG – http://www.nccrcg.org/

Newborn Screening Translational Research Network – NBSTRN – https://www.nbstrn.org/facilitated-researchs/severe-combined-immunodeficiencies

New STEPS – https://newsteps.org/

Primary Immune Deficiency Treatment Consortium Network  – PIDTC – http://www.rarediseasesnetwork.org/PIDTC/index.htm

Save Babies Through Screening Foundation – http://savebabies.org/  

State Map & Contact Source for newborn screening – http://genes-r-us.uthscsa.edu/resources/consumer/statemap.htm

 

SCID Family Internet Support Group:

Barb Ballards SCID Group – http://www.scid.net:80

 

Cord Blood Banking:

The Cord Blood Center – http://www.cordbloodbanking.com/cord-blood/

 

Useful Links:

Childrens Organ Transplant Association – www.COTA.org

National Institutes of Health -NIH – www.nih.gov

National Organization of Rare Disorders – NORD – http://www.rarediseases.org

Office of Rare Diseases Research, NIH – http://rarediseases.info.nih.gov/

Rare Diseases Clinical Research Network http://rarediseasesnetwork.epi.usf.edu/

Transportation for patients who are in financial need and cannot afford the cost of air travel.  For more information go to http://www.patienttravel.org/

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

NEJM – http://content.nejm.org/cgi/content/extract/335/24/1806

Reader’s Digest – readers-digest-scan0001

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

Smithsonian Institute – http://historywired.si.edu/object.cfm?ID=5

Associated Press – associated-pressscan0001
http://www.accessmylibrary.com/coms2/summary_0286-6352308_ITM