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Resources and Support

Relevant Links

The following websites may be of interest to patients and families living with thalassemia. Some are medically informative, while others have a more social aspect.

  1. Thalassemia Patients and Friends: www.thalassemiapatientsandfriends.com
  2. Thalassemia/Family Village: www.familyvillage.wisc.edu/Lib_thal.htm
  3. Children’s Hospital Oakland Thalassemia Website: www.thalassemia.com
  4. Cooley’s Anemia Foundation: www.cooleysanemia.org
  5. Thalassemia International Federation: www.thalassaemia.org.cy
  6. Thalassemia Support Foundation: www.helpthals.org
  7. The National Marrow Donor Program: www.marrow.org
  8. The National Stem Cell Foundation is a non-profit that funds clinical trials and research, currently focusing on treatments for rare blood disorders. They are currently funding trials for the treatment of rare blood disorders at Duke University: www.nationalstemcellfoundation.org which features information about thalassemia and many other diseases that can be potentially treated with stem cells.
  9. Children with Diabetes: www.childrenwithdiabetes.com
  10. Isabela's Journey: Her Battle with the Blood Disorder, Thalassemia Major: a new book by Serafina Sammarco. http://www.isabellasjourney.ca/
  11. E-Learing modules about thalassemia by Laurice Levine for the Charlotte AHEC (Area Health Education Center): https://www.charlotteahec.org/continuing_education/registration/workshop.cfm?EventID=37585
  12. MEENA Health Welfare Organization: advocating for children with thalassemia in Afghanistan: MeenaWelfare.org
  13. Cord Blood Banking: Viacord.

Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3347   •   Fax: (510) 450-5647
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