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...

We’re excited to share the results of a 10-year genetics research study, funded in part by the Moebius Syndrome Foundation, that is now published in Genetics in Medicine Open! This study included 149 individuals with Moebius syndrome –  the largest study to date of Moebius syndrome. Most participants (73.8%) were enrolled at Moebius Syndrome Foundation...

New research, funded by the Moebius Syndrome Foundation, has documented higher probable rates of sleep disorders in people with Moebius syndrome. Study participants held higher rates of REM disturbances, increased frequency of probable nightmares compared to the general U.S. population, and had difficulty managing finding improvements to their sleep. Kathleen Bogart, PhD, summarized these new...

Join the Moebius Syndrome Foundation’s Community Advisory Committee! The Community Advisory Committee is a new initiative designed to bring more voices into the Moebius Syndrome Foundation, ensuring we stay connected to our community’s needs. This is a great way to get involved, provide valuable feedback, and contribute to the Foundation’s mission. Who should apply? Those...

The Moebius Syndrome Foundation is excited to offer scholarships for individuals with Moebius syndrome who are planning to attend college, technical, or trade school in the coming year. We’re awarding several scholarships of up to $3,000 each to help support your educational journey! This scholarship opportunity is open to U.S. residents with Moebius syndrome who...

This summer, join us in beautiful Salt Lake City, UT, from July 24 – 27, for a weekend packed with: ✅ Inspiring speakers and engaging sessions ✅ Social opportunities to connect with the Moebius community ✅ Activities and sessions for all ages ✅ Complimentary medical evaluations with distinguished professionals ✅ Life-changing conversations and unforgettable memories...

The Moebius Syndrome Foundation would like to congratulate Austin Halls on fulfilling his term as a Board Director of the Moebius Syndrome Foundation. December 31, 2024 was his last day of service in this capacity, and we thank him for the last three years of dedicated service to our community. We are pleased to announce...

Sponsorships are critical to maintain lower registration rates for the conference! Do you know an organization, company, or individual that may be interested in sponsoring the Moebius Syndrome Foundation 2025 Conference? There are multiple sponsorship levels to choose from. Being an exhibitor enables businesses and individuals to showcase products and services to the Moebius community....

DENVER, CO-The Moebius Syndrome Foundation (MSF) proudly announces the observance of Moebius Syndrome Awareness Day on January 24, 2025. This year, we embrace the theme “Celebrating 30 Years of Community” to highlight the 30-year journey of the Moebius Syndrome Foundation as we support individuals and families living with Moebius syndrome. Moebius syndrome is a rare...

The Moebius Syndrome Foundation is delighted to announce the recipients of the 2024 Community Empowerment Grant. Lisa Smant, Career Mentoring and Coaching Lisa Smant’s idea will help the Foundation provide individuals with Moebius syndrome the opportunity to connect with a professional career coach in private and group settings. This program will be supported by $1,000...