National Advocacy for Sickle Cell Disease Treatment Centers
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
Event Details
February 4, 2022 at 12:00pm EST - 1:00pm EST
Please submit questions to Keiko Purnell at kpurnell@nmqf.org. We also welcome suggestions for future webinar topics, as we plan to host more very soon!
