The original leaders in Moebius syndrome

Founded in 1994, the Moebius Syndrome Foundation has been the center of the Moebius syndrome community for nearly 30 years. Our conferences allow individuals with Moebius syndrome and their families to meet each other, build friendships, and find support. Researchers and medical professionals come together to advance our knowledge of Moebius syndrome. This is why – we are the Home for the Moebius Community™.

Our Work

Building Awareness & Community

Moebius syndrome is an extremely rare condition with little awareness. We advocate to increase familiarity through Moebius Syndrome Awareness Day and regional events, and build community by providing ways for people to connect in-person and virtually.

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Hosting Moebius Syndrome Conferences

Moebius Syndrome Conferences provide a place for individuals and families with Moebius syndrome to connect. Each conference offers a different line-up of professional speakers.

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Funding Scientific Research

As of 2021, the Foundation has provided $1.4 million in research funding for numerous research grants and hosted 8 Research Symposiums.

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Awarding Educational Scholarships

Each year, the Moebius Syndrome Foundation awards several educational scholarships of up to $3,000 each to individuals who have Moebius syndrome and are pursuing undergraduate, graduate, and professional studies at colleges, universities, and post-secondary vocational schools in the United States.

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Research Funding
Educational Scholarships Awarded
Moebius Syndrome Conferences
Research Symposiums

Upcoming Events

Please be sure to note the time zone for each event. Local events are listed in their respective time zone. All virtual events are listed in Mountain Time.
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Help us empower people with Moebius syndrome

Your donation goes towards programming for adults and children with Moebius syndrome, and research, education, and awareness of Moebius syndrome.

Join Our Community

Get updates on upcoming events, the work of the Moebius Syndrome Foundation, and more! Fill out the form below to receive an information packet, join our mailing list, and/or connect with other families and adults with Moebius syndrome living in your region. You may also use this form to update your contact information, e.g. a change of address.

Moebius Syndrome Foundation
1312 17th Street #976
Denver, Colorado  80202

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