Extrapelvic Not Rare

Join Extrapelvic Not Rare — Because Endometriosis Is a Body-Wide Disease 

Every day, countless individuals struggle with the devastating effects of endometriosis—a disease that goes far beyond the pelvic region. Yet, due to lack of awareness, education, and advocacy, too many suffer in silence, waiting an average of 10 years for a diagnosis. 

At Extrapelvic Not Rare, we are working to transform the conversation about endometriosis. Our mission is deeply rooted in inclusivity through advocacy, education, and research. We stand with those affected, educate the public, and support independent research—because every person impacted deserves to be heard, supported, and acknowledged. 

Your Contribution Creates Change 

This Big Day of Giving, our goal is to raise $10,000 to fuel groundbreaking initiatives that make an impact: 

📢 Advocacy – Awareness starts in the community. Through our advocacy booths at health fairs, we connect with thousands of individuals, many of whom don’t realize that someone in their life may be suffering from endometriosis. Your donations will ensure we can participate in at least 10 advocacy events in 2025, expanding public knowledge and making endometriosis more visible.

📚 Education – We are translating our book, The ABCs of Extrapelvic Endometriosis, into additional languages, ensuring free worldwide access to accurate, evidence-based education. With your support, we will also distribute hard copies to medical programs, empowering the next generation of healthcare providers to recognize and treat endometriosis earlier. 

🔬 Research – Science meets community at Extrapelvic Not Rare. We are preparing to publish the results of our international survey of people with surgically confirmed thoracic and/or diaphragm endometriosis —a critical step to advance recognition of symptoms and misdiagnoses that contribute to delayed diagnoses in this poorly understood location of the disease. Publishing costs add up, and your support ensures that this vital work reaches the medical community and public. 

Where Does the Support Come From? 

68% of our donations come from passionate individuals like you – those who believe in the power of standing up for proper endometriosis awareness. The remaining 32% has come from companies, largely through matching gift programs. When you donate, your workplace may be able to match your gift, doubling the impact of your contribution. 

Your Gift Drives Impact—Support Education, Advocacy & Research Today 

Your support propels our mission forward. Every dollar helps us shorten diagnostic delays, educate future medical professionals, and raise awareness for endometriosis as a body-wide disease. 

Donate today and be part of a movement that refuses to let endometriosis remain in the shadows.