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National Minority Quality Forum Webinar: National Advocacy for Sickle Cell Disease Treatment Centers



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The Council for Sickle Cell Disease Healthcare Equity is advocating for federal legislation to address the unmet needs of patients with sickle cell disease and other heritable hemoglobinopathies by significantly increasing the funding and support for treatment, research, and education.

Among its key provisions, the "Sickle Cell Disease and Other Heritable Hemoglobinopathies Treatment Centers Authorization Act of 2022" would:

- reauthorize the Sickle Cell Disease Treatment Demonstration Project;
- establish sickle cell disease treatment centers;
- identify a [national/regional] coordinating center(s); and
- improve and expand data collection and surveillance.

The goals of the webinar are to provide an update on the legislation and discuss ways for the community to mobilize in support of the legislation.

Panelists
Dr. Biree Andemariam
Professor of Medicine
University of Connecticut School of Medicine

Dr. Betty Pace
Professor of Pediatrics and Biochemistry and Molecular Biology, Francisco J. Tedesco Distinguished Chair of Pediatric Hematology/Oncology Medical College of Georgia at Augusta University

Moderator:
Molly Ryan
Vice President, Government Affairs and Policy
Global Blood Therapeutics
Category
Health
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