Heather Guidone has been a central figure in the endometriosis and women's health communities for nearly 30 years. She is internationally known as a subject matter expert on the disease and for her tireless work on behalf of the worldwide endometriosis community. She will compassionately guide you along your journey with our Center and help you navigate, understand, inform and empower your experiences. Heather is responsible for upholding the CEC's culture of patient-centric care and coordinating the Center's research and surgical Fellowship programs, patient engagement and public policy efforts, quality measures and much more. Above all, she serves as the patient's advocate through every step of their care with the CEC.
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 since beginning her career in endometriosis decades ago. Her priority focus remains on reducing the time to diagnosis and fighting for access to effective treatments in order to improve outcomes; collaborative network building among multidisciplinary providers; ensuring patient stakeholder representation across the fields of endometriosis/pelvic pain and women’s reproductive health; and raising the profile of endometriosis among healthcare providers and the public. She is a Board Certified Patient Advocate, a Health Educator, CME/Medical Writer, a CITI-certified Research Co-Investigator/Coordinator, a Patient-Centered Outcomes Research Institute (PCORI) Ambassador, a PCORI Merit Reviewer, and more…but above all else, she is an individual who also struggled with and ultimately overcame advanced, painful endometriosis and infertility after many years of failed treatments.
She anchors a number of off- and online education, engagement, research and support initiatives, lectures on behalf of the CEC internationally, and fights for positive strides in endometriosis across all demographics, including the collaborative effort to call attention to the institutional shortcomings in endometriosis education, treatment and reimbursement. Heather has been profiled in countless publications ranging from featured segments by Dow Jones Media to The Guardian 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.” She remains extremely humbled by and grateful for the recognition her work has received, including awards given to her at the 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 contributions to endometriosis and women's health, because it was the first time in the Foundation's history that endometriosis took center stage.
She has volunteered her time and service to countless endeavors related to endometriosis for decades. Among many organizations, journals and initiatives, she has served on the Executive Board of Directors of the ERC since 1997 and also serves as an Advisor to the EndoWhat? organization, which recently secured bipartisan funding for endometriosis research from the United States Department of Defense's Congressionally Directed Medical Research Program for the first time in history. She is also featured alongside Dr. Sinervo and various other experts in the groundbreaking EndoWhat? Documentaries on the disease. Heather has also previously served out an elected two-year appointment to the Executive Board of the American Society for Reproductive Medicine's Women’s Council. In 2012, she was appointed to the prestigious President's Council of the National Patient Advocate Foundation 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. She has also served as a professional collaborator in RESOLVE's ‘advocacy day’ efforts throughout the House and Senate. Most recently, she was one of five invited panelists to testify before the Institute for Clinical & Economic Review regarding the fiscal and clinical feasibility of elagolix (Orilissa), an event that led ICER to issue formal findings questioning the clinical benefits and cost-effectiveness of the drug. She also serves on the Pelvic Pain & Abnormal Uterine Bleeding Panel of the American College of Obstetricians & Gynecologists in Washington, DC.
Heather is a member of the American Public Health Association; American Academy on Communication in Healthcare; Academy of Women's Health; Society for Menstrual Cycle Research, wherein she has served as a keynote speaker on endometriosis, a member of a Public Health Panel developing national guidelines and curriculum for menstrual education, and a contributing author to their upcoming academic book on Critical Menstrual Studies; the Society for Participatory Medicine; the National Association of Chronic Disease Directors, wherein she has also been appointed to the NACCD Policy Committee and the Women’s Health and Health Equity Councils; the Association of Reproductive Health Professionals; AAGL, wherein she serves on the AAGL Special Interest Group for Endometriosis, as a Congress Committee Member, and Scientific Abstract Reviewer; as well as many other professional societies. She has previously completed the National Health Council’s training on Increasing Patient-Community Capacity to Engage on Quality of Health Care (the science-based training required of PCORI Ambassadors) as well as countless other healthcare and policy training endeavors. She is a former member of OBGYN.net's Women & Patients Advisory Board, and a 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.
Heather is also a 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. 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, and was previously appointed to the AMWA Education Committee. She participates in the NCD Alliance’s Community of Practice on the Meaningful Involvement of People Living with Non-communicable Diseases, and was also recently appointed to the PACB Continuing Education Task Force. Heather has authored immeasurable disease education materials used by various endometriosis organizations across the globe, and as a member of the World Endometriosis Society San Antonio, Montpellier and Sao Paolo Consortiums, comprised of more than 50 representatives from over 30 global organizations, she has contributed to the Consensus on the Classification of Endometriosis and the Global Consensus on the Management of Endometriosis.
Above all else, she 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.''
She continues her tireless work to meet the domestic and international needs of the endometriosis community, contributing freely to like-minded initiatives with multiple collaborators in order to promote advances in the 'art and science' of the disease, 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 and believes in the power of transparent, agenda- and competition-free, apolitical collaboration across all aspects of endometriosis. She feels absolutely blessed and grateful to be a member of Dr. Sinervo's team, which is dedicated and committed to improving lives through integrity, the 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.