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, and most influential, of endometriosis organizations to be formed; we 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 shareholders in the disease, to ensure that society recognizes the far-reaching impact the illness continues to have on patients of all ages - not just those trying to conceive - so that that tomorrow's daughters do not continue to suffer needlessly as their mothers and sisters have before them. Since our inception, we have tirelessly addressed myths, misinformation and lack of understanding about this illness on a global basis. 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; there is no other organization offering free endometriosis support and information to the lay and professional communities concerning this disease anywhere in the world. With our world headquarters located in South Florida, USA , our organization is pleased to host a virtual network of staff and volunteers - men and women - around the world who help implement our various programs in the online and local communities throughout the world. Every single penny we receive is directly applied to the maintenance of our programs and is used solely to facilitate our efforts - not salaries. Similarly, unlike other endometriosis organizations, we do not accept funding from GnRH manufacturers nor from physicians in exchange for providing referrals.
We are an established presence in the worldwide endometriosis community, working with the best of the international research and healthcare industry to make a positive global impact. The ERC also believes ALL research is worthwhile, no matter how large or small the study initiative may be. To that end, we assist industry leaders with developmental studies and data collection on the disease; lobby the National Institutes of Health and similar foundations in support of various research grants; and so much more. We are always actively involved in 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 also the coordinators of the world's first self-collection kit and testing method to attempt to provide a screening system for the illness. The preliminary results were promising, particularly for undiagnosed women and adolescents, and this novel work quickly became a primary area of focus for the global biotech community. The ERC has also previously conducted a study into a potential relationship between the use of 'Menstrual Cup devices and Endometriosis' in association with the esteemed President of Associated Pharmacologists & Toxicologists and Author of the prestigious ReproTox Database.
Our organization performed a large product focus study involving the first unique, all-natural topical product designed specifically for menstrual cramping, as well as on similar products including a specially-designed heating pad for women and girls with the disease. 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 women with the disease 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, most of the world's endometriosis foundations and organizations to achieve a unified goal on behalf of all those suffering.
Ours was also the first organization to implement a unique program designed to raise awareness and education among professionals associated with the disease. By developing the ERC's ADOPT-A-DOC/EndoMed Program, we have been able to encourage global collaboration on, and advance the study and treatment of, all aspects of endometriosis for researchers, physicians, scientists and healthcare professionals from all over the world. We are also attempting to further define epidemiology, and to that end have been working to establish a formal disease registry. 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; in some instances, even publicly challenging popular study conclusions. For example, we publicly refuted Yale University's highly touted "Sexual Activity, Orgasm & Tampon Use are Associated with a Decreased Risk of Endometriosis" report in the Journal of Gynecologic & Obstetric Investigation, citing extensive evidence as to why this theory was flawed. We also publicly confronted an Expert Panel Consensus Report in a very public response to the Journal of Fertility & Sterility, which promoted the use of GnRH drugs over more efficacious treatments, as well as took a public and highly vocal stance against the bias that many other organizations exhibit based on their funding and donor sources.
The ERC has had the privilege of benefitting from teachings of global experts over the years, including Robert B. Albee, Jr., MD, Founder of the Center for Endometriosis Care; Dr. Ken Sinervo, Medical Director of the Center for Endometriosis Care; Heather Guidone, Surgical Program Director of the Center for Endometriosis Care; Wendy Winer, RN, BSN, CNOR, RNFA of the CEC; Cindy Mosbrucker, MD; Serdar Bulun, MD, RE; Nancy Petersen, RN, Founder of the St. Charles Endometriosis Excision Treatment Program and global endometriosis educator; William Fleming, Ph.D., Vice Chairman of A-FEM Medical; Dr. Armand Lione, President of Associated Pharmacologists & Toxicologists and author of the prestigious ReproTox Database in Bethesda, MD; John Dulemba, MD, one of the world's top robotic excision experts; Michael Clifford, M.S.O.M., Dipl Ac. (NCCAOM), L. Ac.; Dr. Sallie Sarrel, the world's leading expert on physical therapy in endometriosis; Dr. Jennifer Ritchie-Goodline, a Clinical Psychologist in private practice with a focus on women's issues; Camran Nezhat, MD and Harry Reich, MD; and countless others who have contributed to the world of endometriosis for the past several decades. It has always been our goal to bridge the gap between the constituency and those surgeons/researchers who have been lighting the path.
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. We were also presenters at the first national EndoWalk for Awareness 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, it was our efforts which resulted in the first-ever U.S. National Endometriosis Awareness Resolution, unanimously passed by Congress. A most gratifying success on behalf of American women and girls with the disease, 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 is 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 feminine hygiene products and the subsequent risks these toxins pose to women and their children. AB 2820 was approved by majority vote and passed on to the Senate Committee on Health & Human Services. We were also pertinent to the creation of the country's first-ever Legislative Tool Kit.
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, race or socioeconomic status. Not only for women 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 women 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 our daughters of tomorrow. We were also the first organization to address the unique perspective of, and offer specifically tailored materials to, the underserved community of LGBT individuals with endometriosis through our groundbreaking and unique "Women 2 Woman" program. The ERC also assisted John Blondin & Carey Lewis, founders of MENDO, with the implementation of the male support group, the first of its kind in the world for men who love women with endometriosis.
Contrary to other organizations which do not believe in the power of collaboration, we are very pleased to enjoy relationships with similar, like-minded foundations. We are grateful for the opportunity to collaborate with and support other worthwhile organizations, and the ERC is represented in the World Endometriosis Society, AAGL, SLS, the World Endometriosis Research Foundation, the American Society for Reproductive Medicine, the international PAX Society, the National Pain Foundation, the American Chronic Pain Association, the Association of Reproductive Health Professionals, the Association of Operating Room Nurses, ResearchGate, and many other prestigious organizations. We are also a Founding Partner in the Society for Women's Health Research, a collaboration sponsored by the Alliance for Women in Clinical Research. A cruelty-free charity, the ERC is also a member of the Physician’s Committee for Responsible Research Humane Charity Initiative and the Primate Freedom Project's "Moratorium on Primate Research." The Guidestar Foundation, a Federal charity watchdog organization, formally recognizes our organization as a member in good standing for well over a decade. 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 the women and girls 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 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. We also hosted a stamp campaign to have the formally recognized on a U.S. stamp. 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.
At a glance, ERC has achieved success in various areas of the disease, including:
- Political and legislative agendas (helped facilitate the creation of the first and only legislative tool kit authored for Congress, formal awareness month establishment, much more)
- Awareness (media outreach and partnerships on a global scale)
- Fundraising (cookbooks, 'endo' quilts, cutathons, walkathons, marathons, concerts, retail partnerships, dining partnerships, legacy collaborations, event partnerships)
- Research Initiatives & Collaborations (research funding, product focus studies, non-invasive diagnostic studies, clinical trial recruitment and oversight, fiscal support of scientific and research endeavors; much more)
- Establishment of the Nancy Petersen, RN Nursing Scholarship to promote endometriosis education among the nursing professionals of tomorrow
- Extensive lay & professional education effort
All monies received are applied directly to the afore-referenced and similar campaigns. No donation is used to support salary or advertising costs. ERC DOES NOT PAY SALARIES TO ANY STAFFER.
The Endometriosis Research Center is open to and free for all those concerned with endometriosis: medical professionals, researchers, women 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 women and girls 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