Heather Guidone has been a central figure in the global endometriosis and women's health communities for nearly 30 years. Once called "one of the loudest voices in endometriosis," she is internationally known for her tireless work on behalf of the worldwide disease community. She will compassionately guide you along your journey with our Center and help you navigate, understand, inform and empower your experiences with the disease. Heather is responsible for upholding the CEC's culture of patient-centric care and facilitating the Center's research, training and education, patient engagement, public policy efforts and much more. She also coordinates the CEC's busy Surgical Fellowship Program and serves as the Center's COEMIG Liaison.
Throughout her career, Heather has specialized in 'bench to beltway to bedside' efforts encompassing disease and surgical education, clinical research, policy reform, patient-centered caregiving, health literacy, patient engagement/adherence and much more. Her priority focus remains on reducing the time to diagnosis and effective treatments in order to improve outcomes; collaborative network building among multidisciplinary providers; ensuring patient stakeholder representation across the fields of endometriosis and pelvic pain; and raising the profile of the disease among healthcare providers and the public. She is a Health Educator, CME/Medical Writer, Advocate, Research Co-Investigator/Coordinator and more - but most importantly, she is an individual who also struggled with and ultimately overcame advanced endometriosis and infertility. Heather strongly believes in unity among those fighting for better care worldwide and feels collaboration is key; she is gratified and humbled to be part of the global network of like-minded supporters, activists, educators and practitioners all striving for positive progress in the disease - collaborators she calls 'her daily inspirations.'
Long before the days of the Internet and Social Media, she worked tirelessly throughout the late 1980s to establish awareness, educate the public and facilitate outreach efforts, in what was then an incredibly isolated environment with very little cross-talk and sorely limited collaboration between stakeholders. In the early 1990s, she consulted to America Online in their then newly-launched women’s health division and wrote an invited, nationally-syndicated column for Thrive@Health, one of the first companies to break into the digital health arena with a focus on women's health. Today she remains sought by media and advocacy groups for her expertise and activism in reproductive health, endometriosis and chronic pelvic pain. Heather routinely appears as an invited guest on many media outlets both online and off, including radio shows and press features dedicated to women’s health and infertility, including previously on the Emmy® Award-winning Lifetime Television network's Balancing Act in a featured segment on endometriosis broadcast to the network's 98 million subscribers. She is routinely called upon to dispel disease myths and debunk outdated recommendations, including in a recent prominent series of groundbreaking endometriosis articles in The Guardian and a newly launched endometriosis feature by OBGyn News. Heather currently appears in the award-winning documentary, "EndoWhat?" and continues to serve on the film's educational panels at various screenings, including the World Premiere in New York City, the Atlanta Premiere, the Texas premiere, and the New England screening and CME event at Gillette Stadium. She continues to anchor a number of off- and online education, engagement, research and support initiatives, lectures internationally, and fights for positive strides in endometriosis across all demographics.
She has been profiled in a number of publications, ranging from featured segments by Dow Jones Media to industry sales force panels, including the OmniGuide Surgical annual international corporate meeting, wherein she served as Keynote speaker. She was also previously chosen by the United States Office on Women's Health in the US Dept of Health & Human Services as their “Spotlight on Women’s Health.” Heather remains extremely humbled by and grateful for the recognition her work has received, including awards given to her by the Nezhat Family Foundation at their first annual EndoMarch. She is most proud, however, of being honored by the National Women’s Health Foundation in 2012 with their coveted “Passion for Pelvic Health” championship award, given in acknowledgment of her lifetime contributions to women's health. It was the first time in the Foundation's history that endometriosis took center stage. Calling it “a celebration of ALL individuals with endometriosis who struggle to be heard every day,” she accepted the honor on behalf of all those with the disease at the Foundation's annual sold-out Below the Belt gala, telling the audience "...despite 176MM individuals suffering in silence from this insidious disease, endometriosis remains largely regarded and treated like the proverbial neglected stepchild of gynecology across the medical community. The time to realize the unfathomable impact of this disease across our global society on a personal and financial level is NOW."
She has held numerous consultancies with many global institutions over the years including Padma Lakshmi’s Endometriosis Foundation of America in its infancy, wherein she served a three-year term as consulting Director of Education & Industry/Research Liaison helping to implement the organization's founding mission and goals in its launch. She also chaired Ms. Lakshmi's First Annual School Nursing Endometriosis Education Conference, the first event of its kind. She also chaired the Foundation’s second annual scientific conference and served as Faculty for a number of the Foundation's events. Heather has volunteered her time and service to countless other organizational and charitable endeavors for the disease for decades, including the Endometriosis Research Center, wherein she has served on the Executive Board of Directors since 1997. She also previously served out an elected two-year appointment to the Executive Board of the American Society for Reproductive Medicine's (ASRM) Women’s Council.
Heather was appointed in 2012 to the prestigious President's Council of the National Patient Advocate Foundation (NPAF) in Washington, DC, on which she still serves. NPAF is the leading national non-profit organization in the United States exclusively devoted to engaging members of Congress, the Department of Health & Human Services and various coalitions to coordinate efforts to implement and support legislative and regulatory remedies to obstacles to healthcare access at the state and federal levels. Additionally, she was one of the two exclusive invitees to Co-chair and present for the first time on endometriosis in Washington, DC to the legislature at the annual Women in Government's Health Summit. That critical event, lauded by state and federal legislators alike, led to the creation by the Women in Government Foundation of the first-ever “Toolkit” now used in the United States by legislators. She has also served as a professional collaborator in RESOLVE's advocacy efforts throughout the House and Senate, working at the highest levels of government and legislation to educate the country's policymakers and strive for better reproductive and infertility care.
She is an active member of the American Academy on Communication in Healthcare; the Academy of Women's Health; the Society for Menstrual Cycle Research, wherein she has served both as a keynote speaker on endometriosis and as a current member of a Public Health Panel developing national guidelines and curriculum for menstrual education; the Society for Participatory Medicine; the American Society for Reproductive Medicine; the National Association of Chronic Disease Directors; the Association of Reproductive Health Professionals, wherein she taught the CEC's course on the importance of collaborative, compassionate care among healthcare providers for gold-standard treatment of endometriosis at ARHP's annual congress - the first curriculum of its kind in the organization's history; AAGL (formerly known as the Association of Gynecologic Laparoendoscopists), wherein she sits on the AAGL Special Interest Group for Endometriosis and serves as a Congress Abstract Reviewer; as well as many other professional societies including the Harold P. Freeman Patient Navigation Institute. She is a former member of OBGYN.net's Women & Patients Advisory Board, as well as the previous Editor of their EndoZONE and Endometriosis Pavilion sites, which were among the first truly global endometriosis education and community sites to hit the web in the early 1990s. She has also, since its inception many years ago, served as an annual invited judge for the National Health Information Resource Centers celebrated "World Wide Web Health Awards" Program.
Heather is a also a Peer Reviewer for the BMJ (formerly known as the British Medical Journal), and was elected to membership in the National Association of Healthcare Advocacy Consultants (NAHAC), the country's leading non-profit organization of professionals who share the goal of promoting safe, effective and humane healthcare services, wherein she remains active. NAHAC members, who must adhere to a strict Code of Ethics, collectively strive to improve the way consumers interact with the healthcare system by supporting public education efforts to foster effective advocacy through complex medical situations; work on legislative and health policy initiatives; and on behalf of dedicated disease-specific populations. She is also a member of the American Medical Writer's Association, the leading professional organization for biomedical writers, editors and other communication professionals in the healthcare sector. Her work has been featured in innumerable publications and resources ranging from the National Women with Disabilities Task Force and Health.gov to the Association of Professors of Obstetrics & Gynecology (APGO) and electrosurgical training manuals, from RedBook and Cosmopolitan Magazine to Dr Oz's Sharecare and many others.
She is known for challenging the status quo, and has been outspoken on many issues including those related to GnRH usage in endometriosis and Sampson's theory as a 'crutch' for poor outcomes. In addition, she has contributed to the Journal of Women's Reproductive Health, Journal of Gynecologic Investigation, Journal of Minimally Invasive Gynecologic Surgery, Journal on Human Reproduction and more, including "Dialogue For Shared Decision Making: Patient Perspective in an Endometriosis CME Adapted for an Integrated Health Care Delivery System" [13th World Congress on Endometriosis, Vancouver, Canada, May 17-20, 2017: H. Berthoud, A. Wesol, H. Guidone. Group Health Research Institute, Seattle, WA; Group Health Cooperative, Seattle, WA; Center for Endometriosis Care, Atlanta, GA]; Debulked: One Woman's Struggle with Ovarian Cancer. Guidone HC. Women's Reproductive Health. Vol. 1, Iss. 1, 2014; Kongoasa N, Sinervo KR, Guidone H, Albee, RB Jr. How Effective Is Laparoscopic Supracervical Hysterectomy in Treating Adenomyosis? Journal of Minimally Invasive Gynecology 21(6):S127. October 2014; Kongoasa N, Sinervo KR, Guidone H, Albee, RB Jr. Clinical, Surgical & Quality of Life Outcomes Following Laparoscopic Excision of Endometriosis & Bowel Resection for Invasive Bowel Endometriosis. Journal of Minimally Invasive Gynecology 21(6):S38 Oct 2014; Guidone HC, Marvel ME. Concerning the article by Meaddough et al: Sexual activity, orgasm and tampon use are associated with a decreased risk for endometriosis. Gynecol Obstet Invest. 2002;54(2):64-5; and others.
She also ghostwrites and consults for several prominent academic and medical thought leaders, and serves as an Editor for numerous lectures and countless slide kits, scripts and more presented at various professional symposia and international meetings. Additionally, she has authored immeasurable disease education materials used by various endometriosis organizations across the globe. As a member of both the World Endometriosis Society Montpellier and Sao Paolo Consortiums, comprised of 56 representatives from 34 universal organizations, Heather has also contributed to the Consensus on the Classification of Endometriosis [Johnson NP, Hummelshoj L, Adamson GD, Keckstein J, Taylor HS, Abrao MS, Bush D, Kiesel L, Tamimi R, Sharpe-Timms KL, Rombauts L, Giudice LC for the World Endometriosis Society Sao Paulo Consortium. World Endometriosis Society consensus on the classification of endometriosis. Human Reproduction, pp. 1–10, 2016] and the Global Consensus on the Management of Endometriosis [Johnson, Hummelshoj, et al. Consensus on the Current Management of Endometriosis. HumReprod. 2013 Mar 25]. She is also routinely invited by others to edit, contribute content to, endorse and provide forewords to their own publications, including "Coping with Endometriosis" by Glenda Motta, RN, MPH and Robert Phillips, Ph.D., "Living well With Endometriosis" by Kerry-Ann Morris (HarperCollins), the best-selling "Endometriosis: 100 Questions & Answers" by David B. Redwine, MD, Dr. Susan Evan’s critically acclaimed “Endometriosis & Other Chronic Pelvic Pain” and “Healing Painful Sex" by Deborah Coady, MD and Nancy Fish. Her own "Letter from Survivors," a poignant insight into the life of the endometriosis patient, has received international acclaim and been extensively shared by more than a million and a half unique sources both online and off since it was released in 1997, and was presented on the steps of the Lincoln Monument at the country’s first national 'March on Washington for Endometriosis' in 2000.
She continues to serve a cross-organizational initiative for the global establishment of multiple ‘Centers of Expertise’ for the research and surgical treatment of endometriosis, and has a committed interest in early intervention among the adolescent pelvic pain population. To that end, she continues to teach about endometriosis, from 7th/8th grade to university to post-grad level to media outlets, and routinely presents at associations, corporate, community and other health-related symposia. A strong advocate for legislative and insurance industry reform in endometriosis in order to minimize the ubiquitous barriers to care that exist in endometriosis and chronic pelvic pain, Heather continues to promote testimony at state and federal levels, including data concerning dioxin exposure read before the California State Legislature at the invitation of the general Assembly in support of AB2820 (a consequential bill calling for the independent investigation of toxins in feminine hygiene products). She co-authored the text contained in various endometriosis legislative Awareness Resolutions passed by local and national lawmakers, including House Concurrent Resolution No. 291 (2001). HConRes, spearheaded by the late Mary Prenger, which was unanimously passed on the floor by the 107th Congress of the United States and was the first to officially and formally recognize March as Endometriosis Awareness Month in the country.
A MIGS/pelvic pain educator and CITI-certified Research Co-Investigator, Heather also strives for policy, payer and disease education reform in community, government, corporate, school/university, hospital, media and healthcare settings on both the clinical and consumer sides, ranging from Nursing Schools and Residency Programs to university, high school and elementary classes; for award-winning corporate wellness initiatives; among legislators, insurers and medical expenditure panels; in partnership with select non-pharma industry partners; and many others. She is also a Certified Project Manager, and has achieved and maintains active Certification in Human Subjects & Data Specimens Research, including Clinical Trials Involving Drugs & Devices and Vulnerable Populations, from the CITI Program of the University of Miami Leonard M. Miller School of Medicine.
Above all else, Heather considers nothing more important than the patient connection. "All the science and med-speak in the world does not and will never replace empowering relationships with others who understand," she states. "We must also focus on enhancing patient's lives in a meaningful way through true, compassionate, interpersonal connections - sometimes, hearing 'I get it' is more powerful for an individual in that moment than any investigation that may be going on...sometimes, people just want to be heard and believed - and have someone say, 'it will be ok.'' To that end, she is also a Certified Clinical Health Coach trained in formal application of the Transtheoretical Model to Health Education, assisting individuals in securing a more empowered, patient-centered approach in their treatments by helping them to navigate and improve health literacy, shared and clinical decision-making skills and effective self-management.
Heather continues her work to meet the domestic and international needs of the reproductive health community, contributing freely to like-minded initiatives with multiple collaborators in order to promote advances in the 'art and science' of endometriosis, which she has long maintained is more than just a 'women's health issue' - but a true social justice and human rights issue. She will do all she can to help any individual affected by the disease and believes in the power of transparent, agenda- and competition-free, apolitical collaboration across all aspects of endometriosis. She feels absolutely blessed to be a member of Dr Sinervo's team, which is dedicated and committed to improving lives through integrity, highest of ethics, compassion, and superlative skills. She invites contact from anyone wishing to learn more about the CEC via email at Heather@centerforendo.com or by calling the Center toll-free at 866-733-5540 (outside the United States, +770-913-0001).