ABOUT THE ENDOMETRIOSIS RESEARCH CENTER
The ERC was founded in early 1997 by Executive Director Michelle E. Marvel with her vision of addressing the ongoing need for international endometriosis awareness, advocacy, support, education, legislative efforts and research facilitation. Since our founding, we have been giving a voice to those with the disease. We were among the first endometriosis charitable organizations to be formed in the United States and have long enjoyed working with other subsequent organizations over the years to present a unified voice on this disease. The ERC is an independent organization with no affiliation to other foundations; however, we are happy to collaborate with several leading gynecologic and endometriosis associations on various projects when appropriate.
The ERC strives to make a positive impact on behalf of all those affected by endometriosis, to ensure that society recognizes the far-reaching impact the illness continues to have on all who struggle – not just those trying to conceive. We are inclusive, and everyone has a voice in our organization. Since our inception, we have tirelessly pushed back against the myths, misinformation and lack of understanding about this illness on a global basis – sometimes originating even within the endometriosis community itself. There is never a fee to join, participate in or benefit from the ERC’s programs. We do not charge for any services. A free, truly non-profit foundation in every sense of the word, we exist solely on volunteer efforts and donations. We do not pay any staff or executive salaries. 100% of all donations are applied to various programs designed to raise endometriosis awareness and sponsor a myriad of disease initiatives.
We do not accept funding from GnRH analog manufacturers nor do we accept funding from physicians in exchange for patient referrals. We do not have any “Facebook Group” affiliates nor association with any practitioners, though we may call on the advice of leading physician or research experts in the community from time to time. We do not offer physician referrals and do not endorse or recommend any specific practitioners. Those seeking physician referrals should seek out the assistance of legitimate resources such as AAGL, IPPS and APTA (for information purposes only; no endorsement implied). We do not endorse any “vetting” services or “physician lists” and encourage individuals to speak with peers who have undergone care directly. We do not offer medical advice, but rather, advocate for the community so that individuals can access educational information to decide their own best care.
We work with the international research and healthcare community to make a positive global impact. To that end, we assist with developmental studies and data collection on the disease; work on policy-related developments; lobby in support of various research appropriations and provide small funding grants; facilitate ongoing research ranging from recruitment for select clinical trials on proprietary new treatments to participation in genetic research studies for various biotech companies focused on the discovery of novel therapeutics and diagnostics to address significant unmet needs in endometriosis, and much more. We were also the coordinators of the world’s first self-collection kit and testing method to attempt to provide a screening system for the illness in the 1990s; the preliminary results were promising, and this novel work quickly became a primary area of focus for the global biotech community today.
Our organization also performed a large product focus study involving the first unique product designed specifically for menstrual cramping experienced by some with the disease, as well as on similar products including a specially-designed heating pad. Our early involvement paved the way for further product developments which are now being embraced by other organizations and used by patients everywhere. We were also involved in the proprietary study into a specific biological sample concentration discovered in people with endometriosis in collaboration with a leading clinical diagnostic testing company (also the first of its kind). We previously conducted a study of medical professionals in collaboration with a leading biotech firm, using data collection and analysis to determine the scientific formulation of a proprietary compound. We are also happy to work with, and support the endeavors of as appropriate, several of our fellow endometriosis organizations to achieve a unified goal on behalf of all those suffering. We were also the first organization in the world to recognize and support critical research into Aromatase production in endometriosis lesions, now a crucial area of interest in the worldwide scientific community. ERC has also been a strong proponent and leader in the effort to educate adolescents, school nurses and community health leaders to achieve early diagnosis and ensure efficacy of treatment early in the disease process.
We also investigate controversial issues in endometriosis research to ensure that all facets of the disease are adequately addressed; even publicly challenging popular and politically accepted study conclusions, and we continue to maintain a vocal stance against organizations and academic centers that exhibit industry-biased outcomes as a result of their funding and donor sources and pharmaceutical/device ties.
The ERC has collaborated on countless books, publications, documentaries, videos and much more pertaining to the disease over the years, as well as working with the extended media to bring education and awareness to lay and professional societies alike. Additionally, the ERC was the first to sponsor and host the first (and of course, free) educational internet webcast during our Symposium and workshops held at the ERC national Conference in the U.S. capital city of Washington, DC in 2001. We were also presenters at the First National EndoWalk for Awareness on March 25, 2000 at the invitation of the five independent founders and organizers of the event. We are a leader in awareness initiatives, with ours being the first endometriosis advocacy organization in the country to undertake the important task of raising awareness among policymakers. Subsequently, the ERC is nationally renowned for our pioneering efforts and successes in the legislative arenas, helping to raise recognition about issues pertinent to endometriosis education and research at the governmental level.
To that end, our efforts resulted in the first-ever U.S. National Endometriosis Awareness Resolution, unanimously passed by Congress. The 107th Congress of the United States formally recognized the disease on the Floor of the House through the introduction and adoption of H.Con.Res.291. This Bill formally proclaimed March as National Endometriosis Awareness Month and expressed the sense of the United States Congress that it “strongly supports the ERC’s efforts to raise public awareness of Endometriosis throughout the medical and lay communities and recognizes the need for better support of patients with Endometriosis, the need for physicians to better understand the disease, the need for more effective treatments, and ultimately, the need for a cure.” Though March has long been universally celebrated as Awareness Month, ours was the first-ever nationally endorsed resolution read on the House Floor to formalize March as Endometriosis Awareness Month. Additionally, several additional state and local Resolutions have also been passed on the ERC’s behalf across the nation. We have also testified before the California State Legislature by invitation of Assembly Bill 2820, a crucial health bill calling for independent research into the presence of dioxins in menstrual hygiene products and the subsequent risks these toxins pose to users. AB 2820 was approved by majority vote and passed on to the Senate Committee on Health & Human Services. We were also participants in the creation of the country’s first-ever Legislative Tool Kit. The ERC is also a proud supporter of the EndoWhat? School Nurse Kit Initiative, which places accurate, timely education on endometriosis in schools across America. EndoWhat? also secured millions of dollars in endometriosis research funding from the United States Department of Defense Congressionally Directed Medical Research Programs (CDMRP), and the ERC was proud to be represented on the panel evaluating the research applications submitted to the PRMRP.
In addition, we are proud to support Below the Belt, the groundbreaking documentary Executive Produced by American diplomat, attorney, writer and speaker who served as U.S. Secretary of State, U.S. Democratic Senator from New York, and First Lady of the United States, Hilary Rodham Clinton; actress Rosario Dawson; and actress Corinne Foxx. The film is directed by acclaimed endometriosis activist Shannon Cohn, an attorney and filmmaker whose work has appeared on Discovery Channel & Nat Geo, among others. Her previous film Endo What? was hailed by Gabrielle Jackson of The Guardian as “film of the year” and by Newsweek as “the first step in a plan for change.”
It is our belief that no one with this disease should suffer in silence, and we continue to strongly advocate for early intervention, timely diagnosis and efficacy of treatment. Our primary concern is working hard to improve the quality of life for all those affected by this illness, at any age, gender identity, sexual orientation, race or socioeconomic status. Not only for those with the disease but also for those who love them, the ERC was also first to offer an organization-owned support group in the early days of the worldwide web. We are still working hard to try and change things for the patients of tomorrow.
Led by a Founder & Executive Director who personally suffers from this disease, the ERC works towards common community goals, collaborating regularly with many individuals from different professional and patient organizations around the world to ensure their voices are heard. We believe when one of us has a success, it is a success for all.
The Endo Research Center is free and community-driven. Our programs and initiatives are directed by those with the disease and the professionals serving them. We recognize that empowerment over this disease comes through action, and to that end, we offer opportunities for many different – and autonomous – ways to get involved. Whether it is helping to raise awareness and promote legislation, or volunteering for the ERC in any capacity, our programs are all directed by our participants. We’ve had fun and festive member-driven events such as marathons, luaus, Zumba days, salon days, concerts, awareness walks, “shop for the cure,” yoga days and so many more in the name of awareness and fundraising for a cure. We previously developed and sold a wonderful, community-authored cookbook and continue to offer our endo-branded clothing/accessories. We have also collaborated with the leading authors of the best selling books about the disease. Additionally, ERC has hosted and fiscally supported various academic/educational presentations as well as presented testimony before governmental organizations in the name of raising awareness and providing education. We welcome and encourage all ideas and proposals on how everyone can get involved and help make a difference. Anyone can be involved, on any level. How much – or how little – is up to the individual.
The Endometriosis Research Center is open to and free for all those concerned with endometriosis: medical professionals, researchers, people of all ages with endometriosis, and anyone interested in the disease.
ERC World Headquarters: 630 Ibis Drive | Delray Beach , FL 33444 | USA Toll free (800) 239-7280 | Direct (561) 274-7442
ERC REGISTRATION #CH7844 (STATE OF FLORIDA)
A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES (FLORIDA) BY CALLING TOLL FREE (800-435-7352) WITHIN THE STATE OR BY VISITING THE DIVISION’S WEBSITE AT WWW.800HELPFLA.COM. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.
General Inquiries:Endometriosis Research Center
630 Ibis Drive
Delray Beach, FL 33444
Toll Free: (800) 239-7280
Fax: (561) 274-0931