The mission of Extrapelvic Not Rare is:
To educate, advocate, conduct and support research for endometriosis as a disease with body-wide lesion potential and capacity to disrupt systemic homeostasis.
Endometriosis does not discriminate ethnicity, gender identity, socioeconomic status or global residence. As such, EPNR invites all persons with, suspect endometriosis or those who support and/or provide care of persons with endometriosis, to participate in our ventures as attendees or volunteers. We are committed to remove language barriers and include programs to reach those among marginalized communities. As our organization builds sustainability and infrastructure, its mission will be ever present through:
1.) Stimulating conversation across the healthcare spectrum, those impacted by the disease and the general public.
The realization, endometriosis is a common disease, yet most people are either unaware of, or misinformed about it’s pathogenesis, treatment options, body-wide potential for lesions and systemic ills endometriosis lesions contribute to.
2.) Facilitation of interest, accrue and disperse funds to explore alternate theories of origin, pathogenesis and patient experiences with extrapelvic endometriosis. Preference toward independent researchers is given.
Ongoing actions and those EPNR is committed to undertake to achieve its mission include, but not limited to:
1.) Development of literature with up-to-date information about extrapelvic disease to include: signs and symptoms, diagnostics and appropriate treatment referrals.
Literature across all platforms will be directed toward the healthcare sector and general public.
2.) Management and regular updates of an online library of information for healthcare providers and the public. Primary content focus concerns endometriosis that occurs outside the reproductive organs, support structures and local areas. The online library contains, but is not limited to: basic anatomy, facts, statistic, diagnostics and treatment for disease among non-reproductive structures. Integral to our mission is the lived experiences of those with extrapelvic endometriosis.
For change to occur, a catalyst must exist. Testimonies of those who live with the disease, struggle for diagnosis and endure dismissal from healthcare professionals that its ‘too rare’ or ‘not that bad’ are integral to achieve our mission. EPNR is dedicated to be a voice, of, for and through which those with extrapelvic endometriosis can be heard, listened to and acknowledged through change. EPNR will maintain a resource hub with additional linked sources for community members. Supplementary topics included among the online library include disease among persons assigned male at birth (amab), persons assigned female at birth (afab) prior to the onset of the menstrual cycle (premenarche), after menopause and common conditions that occur with sustained inflammation of endometriosis.
3.) Advocacy across multiple platforms to improve education content of publications.
This includes: medical curriculum and healthcare professional continuing education; media publications to the general public for inclusion and accurate information about extrapelvic disease; inclusion of extrapelvic disease among the ‘conversation of’ endometriosis among organizations responsible for policy, treatment, education of the public or healthcare professionals dedicated to Women’s Health.
Extrapelvic Not Rare is a 501 (c)3 tax-exempt charitable organization. We do not receive sponsorship or financial incentives from organizations or corporations that may benefit from provision of services, equipment or pharmaceutical agents in the care of those with endometriosis.
Please consider a contribution to support our mission. Help us help you as we continue to advocate and educate to #changetheconversation about endometriosis as a disease with #bodywide Potential. Donations can be given in $10 increments. (1=$10 2=$20 3=$30 donation). Please save your receipt for tax purposes.
Citations:
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 2/6/2023)
All Rights Reserved © 2019 Wendy Bingham, DPT. Extrapelvic Not Rare