Extrapelvic Not Rare, was created in 2018 by Dr. Wendy Bingham, DPT. It is a grassroots non-profit organization dedicated to advance awareness, education and prompt policy changes that leads to earlier recognition, reduced mis-, and delayed diagnosis of endometriosis of disease outside of the reproductive system and local area among persons afab. EPNR’s target audience includes healthcare disciplines and general public about endometriosis as a disease with bodywide potential.
Board of directors:
Dr. Wendy Bingham, DPT
Executive Director and Founder; President: Board of Directors
Dr. Wendy Bingham, DPT, with more than 20 years in medicine, has experienced endometriosis for 33 years, 30 of which were gas-lit by conventional medicine.
As a thoracic endometriosis (TE) patient herself, Dr. Bingham is also a leading researcher and founder of Extrapelvicnotrare.org.
Considered “the voice” of the TE community, she established EPNR to reduce the gap between medical professionals’ limited, oft outdated knowledge and perceptions of endometriosis, to that of persons living with the disease in traditionally ‘rare’ locations. Dr. Bingham brings awareness about, education of, and attention to, all extrapelvic endometriosis. She uses a blended language of science, medical research and personal experience for audiences of healthcare professionals and the public to stimulate conversation about endometriosis as a body-wide disease NOT confined to the reproductive system of persons afab.
Dr. Bingham established the first nonprofit and website exclusively dedicated to extrapelvic endometriosis. She recently presented for The Endometriosis Summit’s annual event in Orlando, Florida and to Iceland’s Minister of Health and Members of Parliament by invitation of the Endometriosis Association of Iceland, both in 2022. She has appeared as a panelist and presenter of webinars to the public, support groups, nonprofits and healthcare students. Additional activities include a series of animated short videos, highlighting issues specific to extrapelvic disease; guest interview for podcasts and recently outreach activities, commencing with women’s fairs with projection to include health/wellness and professional association conferences, as pandemic resolution permits.
As a medical practitioner, Dr. Bingham understands the importance of scientific method and its role in medical advances. As such, support and execution of research, translational to patient care, is part of EPNR’s mission. October 2021, EPNR closed its first research project “Survey of a Select Population of Persons with Surgical Diagnosis of Thoracic/Diaphragm Endometriosis and Their Medical Encounters from Symptom Onset Through Surgical Diagnosis”. Data analysis and draft for publication of results are currently underway.
Prior to EPNR, Dr. Bingham participated in the NCD Alliance ‘NCD’s and Me’ campaign; a catalyst to the World Health Organizations recent acknowledgement of Endometriosis as a global disease and need to develop local-to-global policy changes to address social and economic injustices persons with endometriosis encounter (NCD Story). Dr. Bingham obtained a BS in General Science at Oregon State University, Master of Physical Therapy at University of Maryland Eastern Shore (MPT) and Doctor of Physical Therapy (DPT) at Temple University.
- Twitter: @xtranotrare
- Instagram/IGTV: @ExtrapelvicNotRare
- YouTube Channel: ExtrapelvicNotRare
- Facebook: Extrapelvic Not Rare Endo Support and Education Group
Perry Salzhauer, JD LLM
Board of Directors: Secretary
Perry is a corporate and environmental attorney (partner/shareholder) with Greenlight Law Group. He represents and advises, both public and private entities to ensure compliance with laws. His professional interests include sustainability and environmental conservation as they pertain to land-use and business development. In addition, Perry works with businesses to streamline business costs and maximize productivity and profit. He began his professional career in Washington DC, later practicing in and maintains licensure in the states of New York and Oregon.
In recent years Perry served as a chairman for the Cannabis Law Committee of the Oregon State Bar.
Perry graduated from Vanderbilt University Law School, Nashville TN (LD) and received a post-graduate certificate in Environmental and Natural Resources Law (LLM) from Lewis and Clark Law School, Portland, OR. Perry has witnessed the effects of endometriosis on his spouse’s quality of life and understands the impact it has on the person’s support system. Perry currently resides in Seattle, WA with his wife.
Scientific Advisory Commmittee:
Nick Fogelson, MD FACOG
(Bio coming soon)
Robert P Sutcliffe, MA MB BChir MD FRCS
(Bio coming soon)
Joseph S. Raccuia, MD
(Photo and bio coming soon)
Wendy Bingham, DPT
(Photo and Bio above)
Corporate Advisory Committee
Advisor – Relations and Communications
Alexandra Mitchell (Alex) has a decade worth of professional experience among Government, Education, Media and NFP organizations.
She served as Radio Producer and Content Creator for ‘Mornings with Kelly Fuller’ on ABC England North West. Alex also provided limited content for the ‘New South Wales Country Hour’ on ABC. While employed with the Australian Human Rights Commission, she served as Executive and Research Assistant for the late ‘Age and Disability Discrimination Commissioner’ (Susan Ryan, AO). More recently, she served as Assistant to the ‘Director of Macquarie Park Innovation District (MPID)’, ‘Executive Director of Corporate Engagement’ and ‘Director of Incubation and Entrepreneurship’, concurrently. In these roles, she was instrumental in the development of the Macquarie Park Innovation District’s (MPID) Summit and Macquarie University’s Pitch at the Palace Competition; including presentation with British Royalty in attendance.
As an Advisor Board Member for EPNR, Alexandra’s most recent work in Corporate Engagement at Macquarie University prior to diagnosis of Extrapelvic and Deep Infiltrating Endometriosis, brings professional experience and personal perspective of life with endometriosis, assets for the growth and vision of EPNR. Since October 2021, Alexandra has advised and assisted Extrapelvic Not Rare with communications to include: video direction and edits of EPNR presentation for the 2022 Endometriosis Summit, fundraising, and marketing across social media platforms. Current projects include development of a Volunteer Program and website modifications. She is Creator and Host of Invisible Iconic; A podcast with content pertaining to endometriosis. Invisible Iconic is available on Spotify and Youtube. She has also contributed historical critiques of Australia and Romania’s standards of healthcare in ‘Good Girl, Bad Period: Breaking the Silence on Misogyny and Gaslighting Through the Lens of Endometriosis’ by Silvia Young (FemTruth, FemTruth Youth, GASLIT). Alexandra received a Bachelor of Arts (Honours) in Communications from the University of Technology in Sydney, Australia.
All Rights Reserved © 2020 Wendy Bingham, DPT. Extrapelvic Not Rare
(last updated 08/05/2022)