Welcome – Bienvenue (en français ici)
Our main goal is to improve the situation for endometriosis and adenomyosis patients and their loved ones. To that end, we founded our non-profit with the following purposes:
- Provide accessible evidence-based information about adenomyosis and endometriosis
- Perform patient-led research
- Develop and participate in health education programs for the conditions
- Build mutually beneficial relationships between patients, health advocates, journalists, medical professionals and academics studying the conditions
- Promote scientific research for the conditions
Our philosophy is that patients and their loved ones are experts: when people directly involved in a disease are recognized as authorities, this has repeatedly been shown to improve patients' lives and also the quality of research: see sources below. Some of the best-known examples are in HIV/AIDS, breast cancer, and recently long covid, all diseases where major advances in care were and still are identified and promoted by patients. In endometriosis, patient advocates have been active for decades, promoting evidence-based education, building networks and communities, and advocating for improved research and funding. We are proud to partner with several internationally.
You can also find us on:
- Mastodon: @aaers@mastodon.online
- Instagram: @aaers_org
- Facebook: AAERS
- LinkedIn: AAERS
A few sources for patient engagement:
- What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings, 2020
- Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute, 2019
- Patient engagement in research: a systematic review, 2014