The Moebius Syndrome Foundation holds events throughout the year so that families and individuals living with Moebius can connect. Every day we provide free, online networks for you to easily connect with families and individuals from across the globe. Learn more »

Moebius Syndrome Foundation Conference

The Moebius Syndrome Foundation Conference is held every two years and is the pinnacle event for the organization. Attracting more than 400 people, the meeting brings together the Moebius community to learn about the latest scientific advances, educational sessions, medical consultations with the nation’s leading physicians and social activities. The next national conference will be held in Minneapolis, Minnesota on July 17-19, 2020 at the lovely Minneapolis Marriott Northwest.

Learn more about past conferences and view photo galleries.

Moebius Syndrome Foundation Mini-Conferences

Beginning in 2019, the Moebius Syndrome Foundation will begin the new Mini-Conferences! These meetings will rotate locations and be held on the odd years from the national conference. Although smaller sized meetings, these will be designed to give members a taste of national conference by offering regional communities a full day of educational and networking sessions. It is our hope that everyone will be able to participate in these events, especially those that have a difficult time attending the national biennial conferences.

Learn More about the 2019 Portland Mini-C0nference.

Learn More about the 2019 Ft. Worth Mini-Conference.

Moebius Syndrome Awareness Day

Moebius Syndrome Awareness Day is an annual event celebrated globally each year on January 24th — the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888. Join us to raise awareness about this rare condition and to educate the world.

Are you hosting an awareness event in 2019? Please let us know the details and we will post them on our website! Email information and event pictures to jenny@moebiussyndrome.org

 Rare Disease Day

Rare Disease Day is the one-of-its-kind international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. Each year, the Moebius Syndrome Foundation partners with the National Organization for Rare Disorders, the U.S. Official Sponsoring Organization. Learn more »