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.html

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/AM/Template.cfm?Section=Home5

National Newborn Screening and Genetics Resource Center – http://www.genes-r-us.uthscsa.edu/

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

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

 

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/

 

Angel Flight @ NIH provides air transportation for patients who are in financial need and cannot afford the cost of air travel.  For more information go to www.angelflightatnih.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