ABOUT THE ENDOMETRIOSIS RESEARCH CENTER
Welcome! We’re glad you’re here. The ERC was founded in early 1997 by Executive Director Michelle E. Marvel with the 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 organizations to be formed in the United States and have long enjoyed working with various newcomer organizations over the years to present a unified voice on this disease.
WHAT WE DO: The ERC strives to make a positive impact on behalf of all those affected by the disease, to ensure that society recognizes the far-reaching impact the illness continues to have on all who struggle with endo – 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. A free, truly non-profit foundation in every sense of the word, we exist solely on donations and do not pay staff salaries. 100% of all donations are applied to programs and initiatives. Moreover, we do not accept funding from physicians in exchange for patient referrals. Our organization is pleased to host a virtual network of staff and volunteers around the world who help implement our various programs in the online and local communities throughout the world.
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; lobby in support of various research grants; and much more. We remain active facilitators of ongoing research, ranging from recruitment for 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. We were 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. The ERC has also previously conducted a study in association with the esteemed President of Associated Pharmacologists & Toxicologists and Author of the prestigious ReproTox Database, among others.
Our organization also performed a large product focus study involving the first unique, all-natural topical product designed specifically for menstrual cramping in those 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. Other collaborations include, but are not limited to, the National Women’s Health Information Center, the U.S. Dept of Health & Human Services Office on Women’s Health and countless others. We are also delighted work with, and support the endeavors of, many of the world’s 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 ranging from Yale University to the self-appointed “Expert Panel” in the Journal of Fertility & Sterility (which promoted use of GnRH drugs over more efficacious treatments); and finally, 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. Our foundation is a proven leader in bringing endometriosis awareness to the forefront of society.
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.
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, sexual orientation, race or socioeconomic status. Not only for those with the disease but also for those who love them, the ERC also hosts active support groups worldwide, and was first to offer an organization-owned support group on the web. We also honor young people with Endometriosis ages 25 and under through our “Girl Talk” Program, a specific support and education program tailored to meet the needs of young women and adolescents who have, or think they may have, the disease. In addition to providing patient advocacy and education, Girl Talk raises awareness about endometriosis in adolescents and strives to improve patient care among practitioners offering healthcare services to young women. We are working hard to try and change things for the patients of tomorrow. We were also the first organization to address the unique perspective of, and offer specifically tailored materials to, the underserved community of LGBTQ individuals with endometriosis through our groundbreaking and unique “Women 2 Woman” program. The ERC also assisted with the founding of MENDO, the first male support group for men who love women with endometriosis, founded in 1998.
Led by a Founder and Executive Director and a team of dynamic individuals who themselves have suffered from this disease or care for someone who has, our close-knit executive committee works together towards our common goals and are highly visible and accessible in the community. We also collaborate regularly with many individuals from different professional and patient organizations around the world. Our mission and our core team are committed to transparency and availability; when support, education, awareness and research needs arise, we will be there. We believe when one of us has a success, it is a success for all.
The Endo Research Center is 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 fundraising to support our initiatives, leading a support group, 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 previously worked high profile individuals such as tennis pro Mary Jo Fernandez to raise awareness and 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.
All donations received are applied directly to the above-referenced and similar campaigns. No donation is used to support salary or PR/marketing/advertising costs. ERC DOES NOT PAY SALARIES TO ANY STAFFER. We do not accept monies in exchange for physician referrals and have no financial ties to industry.
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. It is the ERC’s goal to make a positive difference in the lives of the millions suffering from this disease. Please consider our worthy efforts today. With your support, we can make great strides in the right direction. Our existence depends on the charitable donations and selfless efforts of those who support our mission of improving the lives of the countless millions of individuals worldwide affected by this insidious disease, so please consider lending your support in any way to our imperative efforts today.
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