Extrapelvic Not Rare is an newly established non-profit organization (March 2019). Extrapelvic Not Rare is currently in application for 501 (c)3 tax-exempt, tax-deductible organization. Extrapelvic Not Rare receives no sponsorship or financial incentives from any for-profit organizations or corporations whom may benefit from provision of services, equipment or pharmaceutical agents in the care of those with endometriosis.
The mission of Extrapelvic Not Rare is to:
1.) Stimulate conversation across the healthcare spectrum, those
impacted by the disease and the general public. The realization that
endometriosis is a common disease yet most people are either unaware of, or misinformed about it’s pathogenesis, treatment options, its
body-wide potential for lesions and systemic ills the presence of endometriosis lesions contribute to.
2.) Facilitate increased interest and disperse funds to independent
researchers to explore alternate theories of
origin, pathological processes of extra-pelvic lesions specific (ie other
than Sampson’s Theory of Retrograde Menstruation) and patient
3.) Develop and design literature with up-to-date information about
extra-pelvic disease, signs and symptoms, diagnostics and
appropriate treatment referrals. Literature across all platforms will be directed toward the healthcare sector and general public.
4.) Establish a library of information for healthcare providers and the
public; focal topics of specific extrapelvic locations to include; facts, statistics and treatment with additional links to accurate, up-to-date literature and websites.
(private, organization and corporations). Additional focal topics about endometriosis and its influence on systemic changes are included as appropriate.
5.) Advocate across multiple platforms to improve education content of
medical curriculum and healthcare professional continuing
education; media publications to the general public for inclusion
and accurate information about extra-pelvic disease; inclusion of
extra-pelvic disease among the ‘conversation of’ endometriosis
among organizations responsible for policy, treatment, education of
the public or healthcare professionals dedicated to Women’s Health.
1.) Jubanyik K, Comite F. Extrapelvic Endometriosis. Obstet Gynecol Clin N Amer. 1997;24(2):411-439.
2.) Matalliotakis M et al. Extra-pelvic endometriosis: Retrospective analysis on 200 cases in two different countries. Euro J Obstet Gynecol Reprod Biol. 2017;217:34-37.
3.) World Endometriosis Society. http://endometriosis.org/endometriosis/ (accessed July 5, 2018)
(last update 03/16/2020)
All Rights Reserved © 2018 Wendy Bingham, DPT. Extrapelvic Not Rare