WHY ARE WE HERE?
- Due to long delays in both diagnosis and effective treatment, endometriosis often deeply shifts a person’s life trajectory. Symptoms interfere with education, employment, social and emotional relationships, and fertility.
- Early diagnosis and effective expert treatment can prevent many of the long-term impacts of endometriosis.
- Myths and misinformation are pervasive among both clinicians and the public.
- To make truly informed decisions, individuals need to understand the risks and benefits of all treatment options.
VISION
- A world where endometriosis is no longer a debilitating, life-altering disease, but just a bump in the road.
MISSION
To improve the system of care for endometriosis by:
- collaborating with other endometriosis advocacy groups to amplify the endometriosis patient voice
- providing education to clinicians about endometriosis through social media, press, and presentations at professional meetings
- engaging with clinicians and their professional organizations to advocate for improvements in both access to and quality of care
- encouraging patients to use their power as educated health care consumers to advocate for better care
- assisting in research efforts
To equip individuals with the tools needed to find the right clinicians to address their specific needs by:
- providing a learning library to replace myths and misconceptions with evidence-based information about endometriosis
- helping individuals understand their disease and so they can make informed decisions about their care
- providing tools to help individuals navigate the healthcare system
- championing individuals’ efforts to advocate for their own care
VALUES
- We deeply value diversity and inclusivity. We embrace all sexual orientations, gender identities, gender expressions, ages, races, abilities, ethnicities, national origins, cultures, educations, faith traditions, families, and marital or socioeconomic status. We honor and respect the unique challenges and experiences that come with our diversity.
- In our clinicians, we value compassion, collaboration, critical thinking, and humility. Listening and validation are immeasurably therapeutic, and kindness is highly appreciated. But being kind is not enough. Everyone has their limitations and by knowing and accepting those limitations, clinicians can help each patient access the care they need.
- In the patient/health care relationship, we value fully informed shared decision-making. This requires that patients understand their disease and be aware of their options. It requires an environment where patient’s values, preferences, and dignity are respected and protected.
In short, we’ve been through the endometriosis journey and are aware of the difficulties it presents. We hope this information will help validate your experiences and help you pave your path to the care you need.