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Inaugural Patient Advisory Council to Improve Diverse Patient Representation

Last Updated on Friday, April 11, 2014

Advisory Council seeking applications from committed preeclampsia patients

Melbourne, Florida – April 11, 2014 – The Preeclampsia Foundation announced today the creation of the Patient Advisory Council (“Council”). The council will serve as an advisory resource to the organization’s Board of Directors and staff, furthering the Foundation’s position as a patient-centered, patient-driven, patient advocacy organization. The council’s mission will be to collaborate and advise on policy, program development and design, service and research initiatives as requested by the board or staff. The Council will also ensure that the needs of a diverse patient population of families affected by preeclampsia, eclampsia, HELLP syndrome and other hypertensive disorders of pregnancy are being adequately met by the Foundation.

“The patient voice and experience are and always have been integral to the mission of the Preeclampsia Foundation,” said Executive Director Eleni Tsigas. “The creation of the Patient Advisory Council is a more formal strategy to ensure diversity in voices and experiences as we evolve the strategic planning and development of the Foundation.”

The Council currently consists of three inaugural members: Fathiyyah Doster, of Miami Gardens, Fla.; Carol Hamilton of Naples, Fla.; and Meghan Canedy of New Hartford, Conn, all three survivors of a hypertensive disorder of pregnancy. The council will include a staff liaison and a patient member of the Board of Directors to serve as chair, ensuring that the flow of information between these three groups has direct impact on decisions.

The Patient Advisory Council will be recruiting additional members over the coming months via an online application, with the goal of including approximately a dozen members from diverse demographic, ethnic, racial and health impact representation. Each member of the council will be a preeclampsia survivor or a family member of a woman who suffered death or disability such that she is unable to represent herself as the result of preeclampsia.

“We know that there is a great diversity in experiences when it comes to preeclampsia,” said Board of Director’s member and Council chair Beth Frazer. “Our goal as the Patient Advisory Council is to not only share insights from our own experience, but to see beyond ourselves and act as a voice for the breadth of lives touched by this life-threatening disorder of pregnancy.”

About the Preeclampsia Foundation:  The Preeclampsia Foundation is a U.S.-based 501(c)(3) non-profit organization established in 2000. It is dedicated to providing patient support and education, raising public awareness, catalyzing research and improving health care practices, envisioning a world where preeclampsia and related hypertensive disorders of pregnancy no longer threaten the lives of mothers and babies. For more information, visit www.preeclampsia.org.

UPCOMING EVENTS

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March for Moms Rally

May 6, 2018
Washington DC

 

NIH/NHLBI Workshop on Predicting, Preventing, and Treating Preeclampsia

May 21-22, 2018
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Maternal and Child Health: Tackling Disparities, Improving Outcomes

June 12, 2018
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  Association of Women's Health, Obstetric and Neonatal Nurses National Conference

June 24, 2018
Tampa, Florida

 

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