Links


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  https://www.mercymedical.org/

Root and Wings – http://jmfworld.com/airport/roots-and-wings