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Joan Durnell Powell Patient Advocate at AA & MDS International Foundation

Profile

Joan Durnell- Powell is a dedicated and passionate Patient Advocate, since the diagnosis of not a curable Rare Blood disease (MDS) Myelodysplastic Syndromes (Refractory Anemia with Ringed Sider Blasts) in 2014.

As a MDS survivor herself, Joan came into advocacy expressly to change the experiences and outcomes for patients to change the public dialogue about rare blood diseases and other life-threatening illnesses. In this role, she advocates on projects that compare patient-centered approaches to improve the equitability, effectiveness and efficiency of health care.

Her mission is to engage her patient community, along with physicians, health policy experts, care givers and allied healthcare professions, to develop realistic, solutions. Her oriented discussions are with patients with life-threatening and chronic diseases. Her mission is that her voice is heard in shaping policies that will improve access to quality care. Joan has focused on promoting patient-centered care and ensuring that community voices are heard when compiling and assessing any health care delivery system.

With these goals in mind, she is a dedicated and faithful MDS Patient Advocate, MDS Speaker and serves in various advocacy groups, a clinical trials reviewer, assist with technological medical apps from pharmaceutical companies and research health patient centered organizations:

 Aplastic Anemia and Myelodysplastic Syndromes International Foundation, MDS Foundation, National Patient Advocate Foundation, National organization of Rare Diseases, Patient Centered Outcome Research Institute, Lymphoma and Leukemia Foundation and National Health Institute.

She was on a stakeholder’s team as a Patient research reviewer for the “Practical Guidance for Involving Stakeholders in Health Research” which has been accepted in 2018 for publication in the Journal of General Internal Medicine.

Her Patient Advocacy has provided the honor to represent her State of California by sharing her MDS medical journey for the PCORI Summit 2017 and NPAF 2018 Patient Conference on their Capitol Hill’s Patience Advocacy Days.

She was featured in Cure Magazine the Hematology Fall Edition 2017: http://www.curetoday.com/publications/cure/2017/hematology-2-2017/why-blood-counts-matter-in-myelodysplastic-syndrome?p=2

Joan is a graduate of The Pennsylvania State University with a BA in Social Welfare. Since her retirement as a Commercial and Personal Insurance Investigator. She has been a volunteer - Standardized Patient at the University California San Diego School of Medicine. She is an individual trained to act as a real patient in order to simulate a set of symptoms or problems. She has been successfully utilized for education, evaluation of health care professionals, basic, applied and translational medical.

 Her other life passion is a volunteer and member of several outreach health and community service programs in Orange County California:  National Council of Negro Women, Inc. Orange County Californian Section, Delta Sigma theta Sorority Inc., Orange County, California Alumnae Chapter and Big Brothers and Big Sisters of Orange County, California Alumni Association.

Her personal life quote:” I am humbled and inspired each day to be a Voice for Patients, because giving us HOPE sets us Free.”

Agenda Sessions