- Who We Are
- About Moebius Syndrome
- Living With Moebius Syndrome
- Science & Healthcare
- Events
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: info@moebiussyndrome.org. We can also assist in connecting journalists with individuals with Moebius syndrome, and their families, who are open to talking with the press.
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 $1.5 million in funding for numerous research grants and 10 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.
2026 Moebius Syndrome Awareness Day Press Release
2025 Moebius Syndrome Awareness Day Press Release
New Executive Director Announced
2022 Moebius Syndrome Foundation Conference
Scroll down to our blog for recent news relevant to the foundation.
Rarity Life, Issue 10, 2024 (The Home for the Moebius Community – A conversation with Jenny Whitman; Broadway Songs Are My Smile)
Rarity Life, Issue 9, 2024 Cover (Seriously Spring; Facing the Future)
Rare Revolution Magazine – Ophthalmology Edition, Summer 2023:
More Than A Smile, featuring Dr. Greg Borschel, chief of plastic surgery, Riley Children’s Hospital
Living with Moebius – Leslie’s Story
Living with Moebius – Ashley’s Story
The Hero in Everyone, featuring David Garcia
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
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.
