CAF Receives a Five-Year CDC Grant to Support Its Thalassemia Patient Outreach and Educational Initiatives

September 9, 2020 – The Cooley’s Anemia Foundation (CAF) has received a five-year Cooperative Agreement from the Centers for Disease Control and Prevention (CDC). This funding will be used to support patient outreach efforts, health messaging for the thalassemia patient/family community, and evidence-based training for thalassemia healthcare providers. The new Cooperative Agreement will go into effect on September 30, 2020.

“We are extremely fortunate to have this partnership with the CDC to support our work,“ said Sandy Gilbert, the Senior Director of Medical Affairs at CAF and the Principal Investigator for this Cooperative Agreement. “The CDC is one of the world’s premier public health agencies and their insights and resources have helped to expand the impact and reach of our programs. Our patients also appreciate the CDC’s long-standing commitment to our rare disease community.”

“CAF is pleased to once again be working with the CDC on a project of such importance to the thalassemia community, “said CAF National Executive Director Craig Butler.  “The efforts of both CAF and CDC on behalf of thalassemia are strengthened by our close collaboration.”

Many of CAF’s educational materials have been developed with support from previous Cooperative Agreements with the CDC: “A Guide to Living with Thalassemia” and the “School Toolkit for People with Transfusion-Dependent Thalassemia” were developed through prior Cooperative Agreements. The 64% expansion in the number of CAF’s U.S. patient contacts within the last 6 years was driven by funding from the previous Cooperative Agreement. CAF’s previous Cooperative Agreements with the CDC have been instrumental in helping CAF to expand its contacts throughout the U.S. thalassemia patient community and to provide patients with important thalassemia-related health information. The new Cooperative Agreement will allow CAF to expand its offerings to include evidence-based training for thalassemia healthcare providers. CAF hopes that its new Cooperative Agreement will build on the success of its previous partnerships with the CDC and will ultimately lead to improved health outcomes for people living with thalassemia.

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