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 »

2020 Moebius Syndrome Foundation Virtual Conference

The Moebius Syndrome Foundation will be hosting a free virtual conference during the week of July 13-17, 2020. This will be an opportunity for the Moebius community to come together and educate, encourage, and connect with one another.

Please visit the virtual conference page for more information. 

14th 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 23-25, 2021 at the lovely Minneapolis Marriott Northwest.

Learn more about past conferences and view photo galleries.

Awareness Events

Are you hosting an awareness event in 2020? 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 »