SCID Compass – http://www.SCIDCompass.org
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.html
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 – http://www.NBSTRN.org
New STEPS – http://www.nbstrn.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
Become a Bone Marrow Donor:
Be the Match – http://www.bethematch.org
DKMS – http://www.dkms.org
Cord Blood Banking:
The Cord Blood Center – http://www.cordbloodbanking.com/cord-blood/
SCID Family Internet Support Group:
Barb Ballard’s SCID Email Group – http://www.scid.net
Other Useful Links:
Clinical Trials – www.clinicaltrials.gov
Children’s Organ Transplant Association – www.COTA.org
National Institutes of Health (NIH) – www.nih.gov
National Organization of Rare Disorders (NORD) – http://www.rarediseases.org
National Center for Advancing Translational Sciences (NCATS) – http://rarediseases.info.nih.gov/
Rare Diseases Clinical Research Network (RDCRN) – https://www.rarediseasesnetwork.org/
Transportation for patients who are in financial need and cannot afford the cost of air travel.
Mercy Medical Angels – http://www.patienttravel.org/
Root and Wings – http://jmfworld.com/airport/roots-and-wings