The Alliance for Endometriosis, which was announced in the Fall of 2020, is a collective of women’s health focused organizations united by a singular goal: to improve the lives of the one in 10 women of reproductive age in the United States living with endometriosis.
Alliance members include AbbVie, the American College of Obstetricians and Gynecologists (ACOG), Black Women’s Health Imperative (BWHI), the Endometriosis Association, GE Healthcare, HealthyWomen and the International Pelvic Pain Society (IPPS). The Alliance believes that combining their diverse voices with those of the endometriosis community is the best way to improve the diagnosis and treatment journey for the next generation.
Endometriosis pain is often ignored or dismissed as “normal,” and many women in the United States spend years suffering from symptoms without the support they need. The Alliance for Endometriosis was formed to establish a platform where people with endometriosis symptoms are heard, believed and supported.
As a first step, the Alliance launched a survey at AllianceforEndo.com focused on endometriosis-related stigma and patient and physician relationships. The objectives of this launch included:
By listening to the people directly impacted by endometriosis and understanding what the endometriosis community wants and needs, the Alliance for Endometriosis will create a program with the goal of reducing – or eliminating – the stigma associated with this disease and encouraging more productive conversations that lead to faster diagnoses and improved treatment options and experiences.
Endometriosis is a common, chronic disease that can have a significant physical, emotional and financial impact:
While awareness of endometriosis has increased in the last decade, serious challenges persist, and it was important for the Alliance to hear directly from people with endometriosis to better understand endometriosis-related stigma and patient and physician relationships. Together, AbbVie, ACOG, BWHI, the Endometriosis Association, GE Healthcare, HealthyWomen and IPPS launched a survey at AllianceforEndo.com to inspire conversations that lead to real, positive and sustainable change.
To drive people with endometriosis symptoms to AllianceforEndo.com and prompt them to take the survey, the Alliance took an integrated, 360-degree communications approach designed to reach our target audiences where they are engaging and looking for information. These efforts included:
[i] Simeons S, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod. 2012;27(5):1292-1299.
The Alliance for Endometriosis set a goal of collecting at least 500 survey responses in order to have a qualified sample size to evaluate. The Alliance exceeded this benchmark within two weeks of launching the survey – underscoring the overwhelming need for people with endometriosis to have their voices and experiences heard. As of February 8, 2021, the survey had surpassed 5,825 survey responses from the endometriosis community.
Additional results include:
Results from the survey will be shared at a later date and used to create a program that will help reduce endometriosis-related stigma and encourage more productive patient and physician conversations that lead to faster diagnoses and improved treatment options and experiences.
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