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Women with a Rare Disease Take Control of Their Destiny

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Wednesday, November 07, 2018

MCLEAN, Va. - ConoverSystems.org, Inc., an organization created and governed by women with a rare disease, announced its strategic approach to solving the ever present problem of delivering evidence-based care to those struggling with a rare disease. Young women needing care for Primary Ovarian Insufficiency (POI) have created a streamlined process by which to provide access to specialized health care for themselves and other women. The system they call OMNI PORTAL® makes evidence-based care more accessible by creating a process centered in a virtual clinic supported by modern information technology. Eventually, the OMNI PORTAL® system will make research on the condition more efficient and accessible.

Individuals with rare disorders are known to have difficulty getting proper care. Published reports show that approximately 50% of women with POI see three or more physicians before the condition is recognized and the diagnosis confirmed. The condition presents most commonly with a disruption in the normal menstrual cycle pattern. In 25% of women there is a 5-year delay in diagnosis after onset of initial symptoms. Loss of menstrual regularity can be a sign of ovarian insufficiency, and the associated estrogen deficiency is a well-established risk factor for osteoporosis. POI not only puts young women at risk for osteoporosis, but also causes infertility. Women with POI also have an associated increase in symptoms of anxiety and depression.

"We stand at the forefront of innovation to eliminate the fragmented approach to care and research for those struggling with a rare disease," said Amanda Martinot, DVM, MPH, PhD, President of ConoverSystems.org, Inc. "As women with POI face obstacles in care we are there for them. We are their trusted partner. Our OMNI PORTAL® technology platform will help them succeed."

Women with POI have been asking for this type of leadership. "We hear many positive stories from women with POI who experienced integrated care and research while participating in a clinical trial at the National Institutes of Health Clinical Center. They articulated a need to have women with POI establish a similar self-sustaining approach in the community," said Alison Gatewood Porter, Founder and CEO of ConoverSystems.org, Inc.

ABOUT CONOVERSYSTEMS.ORG, INC.
ConoverSystems.org is a 501c3 tax exempt organization governed by women with Primary Ovarian Insufficiency. Our efforts are dedicated to the patient experience. ConoverSystems.org takes our name and inspiration from the legacy of Mary Elizabeth Conover Mellon. She lived life as a philanthropist, editor, and lover of the arts. She and her husband Paul Mellon established the Bollingen Foundation to spread the teachings of Carl Jung but soon expanded the effort to include other important works in the humanities. Mary served as the president of the foundation and the editor of the series until her sudden death, at age 42, in 1946. ConoverSystems.org, Inc. is grateful for the generous support provided by the Mary Elizabeth Conover Foundation, Inc.

Contact:
Alison Gatewood Porter
(702) 728-9600
204353@email4pr.com
http://ConoverSystems.org 

 

Source: ConoverSystems.org
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