Moebius Syndrome Foundation

Press Room

In 1994, the Moebius Syndrome Foundation launched as the first national patient advocacy organization dedicated to the Moebius community. Now with more than 4,600 members, the Moebius Syndrome Foundation continues to support families and individuals living with Moebius syndrome.

We welcome inquiries from the media. If you are a journalist, please contact: We can also assist in connecting journalists with individuals with Moebius syndrome, and their families, who are open to talking with the press.

Moebius Syndrome Foundation

Our Work

Connecting the Moebius Syndrome Community

The Moebius Syndrome Foundation holds virtual events, awareness events, and bi-annual conferences to educate and build community among those living with Moebius and their families.

Funding Research

As of 2021, the Foundation has provided $1.4 million in funding for numerous research grants and 6 research symposiums.

Educational Scholarships

The Moebius Syndrome Foundation awards several educational scholarships each year to individuals who have Moebius syndrome and who will be attending an undergraduate college, university, or post-secondary vocational school.

The Moebius Syndrome Foundation is a 501(c)3 organization and is headquartered in Denver, CO.

Press Releases

New Executive Director Announced

2022 Moebius Syndrome Foundation Conference

Scroll down to our blog for recent news relevant to the foundation.



Moebius Syndrome In The News

Recent articles featuring Moebius syndrome

Rare Revolution Magazine – Ophthalmology Edition, Summer 2023

The Hero in Everyone, featuring David Garcia

More Than A Smile, featuring Dr. Greg Borschel, chief of plastic surgery, Riley Children’s Hospital

2023 Articles

USF Student Shines Light on Rare Facial Disorder: Moebius Syndrome, featuring Jessica Maher, May 30, 2023

The Safe Place Where Young People Can Feel Accepted For Who They Are, featuring Carly Newsholme, June 30, 2023

Quick Links

Awards & Honors

The Moebius Syndrome Foundation has been awarded the platinum seal of transparency from GuideStar, the leader in non-profit transparency. Check out our profile here.

The Home For The Moebius Community

Moebius Syndrome Foundation News

Spring Newsletter Now Available
Our Spring Newsletter is now available to read and download! Check out the latest community news, including an interview with Dr. Kathleen Bogart on interviewing with facial differences. The newsletter also includes the latest research updates and letters from our board leaders. The Moebius Syndrome News is published twice a year. Articles, photographs, suggestions, questions, and...
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Morgan's Wonderland Wekend Sept 27 - 28, 2024
SAVE THE DATE – Family Fun Weekend! Come Join us for an unforgettable Family Fun Weekend at Morgan’s Wonderland in San Antonio, TX! The Moebius Syndrome Foundation is thrilled to invite you and your loved ones to this special family event. Morgan’s Wonderland is not just any theme park – it’s an all inclusive park...
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A purple spiral notebook with the words “Medical Information Organizer” on the front. Text: Now available: Medical Binder Template. Keep track of important medical information like surgical history, specialists, and medication schedules. Moebius Syndrome Foundation logo.
We are excited to release our new medical binder printable! Keeping track of you or your child’s medical history can be a complex process. This printable includes places to record upcoming appointments, past surgeries, current medications, and a summary of medical history. When you’re at a doctor’s office, you’ll have all of the important information...
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Cruise for Adults with Moebius syndrome
 Seas the Day! A Carnival Cruise for Adults with Moebius  You asked, and we listened! There have been many requests for more social opportunities specifically for adults with Moebius syndrome, and the Moebius Syndrome Foundation is pleased to announce that we are planning a cruise just for you. This exclusive cruise offers a fantastic opportunity...
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Educational Scholarship Apply Now
The 2024 Educational Scholarship Application is now open! Individuals with Moebius syndrome planning to attend college, technical, or trade school within the next year are eligible to apply. Applicants must be residents of the United States.  The Moebius Syndrome Foundation will award several scholarships of up to $3,000 each.  Read more on our College Scholarships...
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The 2024 Moebius Syndrome Awareness Day (MSAD) press release is now available to view.
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Various shirts, sweatshirts, tote bag, mug, and gift card are shown with various Moebius Syndrome Foundation logos and slogans. Text: Holiday Gift Guide. Moebius Syndrome Foundation logo.
The holiday and awareness seasons will be upon us before we know it! Consider giving the gift of new official Moebius Syndrome Foundation apparel and gear to a loved one, or yourself! This is a great way to spread awareness about Moebius syndrome. All proceeds go towards supporting our mission and helping us continue our...
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REQUEST FOR APPLICATIONS: Grant Proposal to Study Moebius Syndrome for New Investigators The Moebius Syndrome Foundation Grant Program is pleased to provide seed-money grants to qualified investigators for scientific and/or clinical research on Moebius syndrome.  This year, the Moebius Syndrome Foundation is actively seeking applications from new investigators who are passionate about advancing the understanding...
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thumbnail of Fall 2023 Moebius News Newsletter
Read and download the Fall 2023 Newsletter here!
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