Media Partners

My Rare ID

The Rare ID QR Medical ID card ensures reliable access to your health information in an instant. A quick scan of the QR code shows your personalized Rare ID health profile, complete with active diagnoses, current medications, known allergies, emergency medical treatment plans, and more.

Alagille Syndrome Alliance

Alagille Syndrome Alliance's mission is “Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”

Macular Degeneration Association

The mission of Macular Degeneration Association (MDA) is to find a cure for macular degeneration through disseminating research information while providing education that will improve the quality of life TODAY, TOMORROW, and in the FUTURE for patients, family members, and their caregivers.

The Family Heart Foundation

The mission of the Family Heart Foundation is to save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia and elevated lipoprotein(a). Through research, advocacy, and education they play a critical role in driving change and empowering families to navigate their own health.

World Orphan Drug Congress

World Orphan Drug Congress: The largest rare disease and orphan drug conference globally brings together leading industry, government and regulatory authorities, patient advocacy groups, payers, investors and solution providers who rely on World Orphan Drug Congress USA to meet, brainstorm and dialogue on ways to advance orphan drug development and improve access to life-saving therapies — all without having to leave their homes.

Foundation Fighting Blindness

The urgent mission of the Foundation Fighting Blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases

The Rare Fair

The Rare Fair is an in-person and virtual event for the global rare disease community, seeking to connect rare disease patients, families, and other stakeholders across the globe.

Women In Ophthalmology

Enhancing and improving the professional environment for women ophthalmologists.