Person living with beta thalassemia kayaking
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Advocacy Groups

People living with TDT pictured may or may not have received CASGEVY.

Noor, living with TDT

Noor, living with TDT

People living with TDT pictured may or may not have received CASGEVY.

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Advocacy groups can help connect you to support and resources from other people affected by beta thalassemia.

You can share your experiences with each other and provide support along the way. Get to know some of these organizations that offer support to the beta thalassemia community.

Cooley’s Anemia Foundation

The Cooley’s Anemia Foundation (CAF) supports people living with different forms of thalassemia but focuses on people living with beta thalassemia. By funding medical research, advising patients and their families, and advocating for them through educating healthcare professionals, the foundation aims to enhance the quality of life for people affected by thalassemia and increase life expectancy for patients.

Learn more about CAF

The Northern California Comprehensive Thalassemia Center

Located at the UCSF Benioff Children’s Hospital in Oakland, CA, the Northern California Comprehensive Thalassemia Center is the biggest thalassemia program in the United States. Beta thalassemia patients can find comprehensive care, research opportunities, and new treatment options at the center.

Learn more about NCCTC

Thalassemia International Federation

The Thalassemia International Federation (TIF) is a non-profit organization founded by people living with thalassemia and their caregivers. Their mission is to provide quality healthcare for patients affected by thalassemia and other hemoglobin disorders worldwide.

Learn more about TIF