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community advocates

Shirley Miller, MA

Community Advocate
Associate Director
Patient Engagement & Communications
Forma Therapeutics
Watertown, Massachusetts, United States

Shirley Miller has over 20 years of experience in program development, comprehensive care management, clinical trials consortium and care coordination among physician specialties for children and adults living with sickle cell disease. Shirley knows the importance of patient and provider education and is a skilled trainer, facilitator and public speaker.

Ms. Miller was named National Patient Advocate by the Sickle Cell Disease Association of America in 2016 and presented the keynote address at the national conference. Ms. Miller was the 2016 spokesperson for the FDA initiative on increasing diversity in clinical trials and her advocacy was featured on a front- page article in the June 10, 2017 issue of “Heme Onc Today”. She has served in advisory positions with various pharmaceutical companies to help design clinical trials that enhance the patient experience and currently serves on the FDA Oncologic Drug Advisory Committee (ODAC) to review and approve new drugs being considered for use in sickle cell disease.

Ms. Miller is a published author of the book entitled “The Stranger Within Me”, a story of her journey living with sickle cell disease. She helped to facilitate meetings in which national patient stakeholders developed a peer mentoring protocol to facilitate transition of young adults with sickle cell disease to adult care and currently serves as a patient advocate and mentor at Carolinas HealthCare System Comprehensive Sickle Cell Program. Shirley is a past board member of the Sickle Cell Disease Association of America and, also currently serves as the coordinator for the Sickle Cell Adult Provider Network (SCAPN). She holds a Bachelor of Business Administration and a Masters in Psychology.

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