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
Babies First Test – http://www.babysfirsttest.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://www.newsteps.org/scid
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 Ballard’s SCID Email 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/
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
