It Takes a Village… and Ours Showed Up Big Time! The Moebius Syndrome Foundation’s 2025 Conference in Salt Lake City was a huge success, and we would like to thank the incredible group of volunteers who helped make it all happen. From the planning committee to the folks working the registration and sales tables, to...

Share Your Story and Help Improve Healthcare for the Moebius Community! Researchers at the University of Wisconsin–Madison are conducting a study to better understand the healthcare experiences of people with Moebius syndrome. The team is looking to interview adults (18+) with Moebius syndrome and caregivers of children under 18 with Moebius syndrome. Interviews are conducted...

In Salt Lake City, on July 24, 2025, the Moebius Syndrome Foundation announced the launch of the Moebius Syndrome Foundation Research Registry. The Moebius Syndrome Foundation launched the Moebius Syndrome Foundation Research Registry with NORD’s IAMRARE® Program! Each participant in the registry plays an important role in advancing Moebius syndrome research. The information they provide...