Extrapelvic Not Rare is an newly established non-profit organization (registration #604 391 655 in the state of Washington, USA). 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 general public. The realization that
endometriosis is a common disease yet most people are unaware of
it or are misinformed about the pathogenesis, treatment options and
that disease can occur in any of the major body systems.
2.) Facilitate increased interest and disperse funds to independent
researchers with an interest in exploration of 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. Audiences to include healthcare
providers and general public.
4.) Establish a library of information for healthcare providers and the
public. Focus on specific topics of concern for each of the body
system involved with disease; facts, statistics and treatment with
additional links to accurate, up-to-date literature and websites
(private, organization and corporations).
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 03/18/2019)
© 2018 Wendy Bingham, DPT. All Rights Reserved