Moebius Syndrome Foundation
The Moebius Syndrome Foundation (MSF) is a U.S.-based 501(c)(3) public charity (EIN 13-3753992) whose mission is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and advocate for scientific research to advance diagnosis and treatment of Moebius syndrome and its associated conditions.
About Moebius Syndrome Foundation
Founded in 1994 by parents and adults affected by the condition, the Moebius Syndrome Foundation is a national patient advocacy organization that convenes the Moebius community, funds research, and provides educational and peer-support programming.
MSF organizes biennial national conferences and regular virtual and regional events, awards educational scholarships to individuals with Moebius syndrome, and has historically funded more than $1.4 million toward Moebius syndrome research and research-focused symposiums.
Notable achievements
Established national Moebius community and conferences
Since 1994 MSF has hosted national conferences and research symposiums that connect families and clinicians, growing a membership community of several thousand people and creating a central hub for information and collaboration.
Sustained research funding
Historically awarded more than $1.4 million in research grants and supported recurring research symposiums that help coordinate scientific study of Moebius syndrome and related conditions.
Expanded scholarship program
In recent years MSF has maintained and expanded its scholarship program (examples: increased awards leading to eight scholarship recipients in 2023) and continued annual scholarship cycles into 2024–2025.
At a glance
- EIN
- 13-3753992
- Location
- Denver, CO
- Website
- moebiussyndrome.org
- On Mahalo since
- November 2025
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