In 1994, the Moebius Syndrome Foundation launched as the first national patient advocacy organization dedicated to the Moebius community and continues to support families and individuals living with Moebius. The foundation now has more than 2,000 members.

We welcome inquiries from the media. If you are a journalist, please contact kim@moebiussyndrome.org.

Background Information

History of the Moebius Syndrome Foundation »

Meet the Leadership of the Moebius Syndrome Foundation »

What is Moebius syndrome? »

Frequently Asked Questions »

Read past newsletters »

Recent Press Releases

Moebius Syndrome Foundation Receives Global Genes RARE Patient Impact Grant (February 2, 2016)

Moebius Syndrome Foundation Represented at Stanford University’s Medicine X | Ed Conference (September 30, 2015)

Moebius Syndrome Foundation Selects First Executive Director to Lead Organization (June 8, 2015)

Moebius syndrome in the news

Sandyston teen drums up support for Moebius syndrome (February 14, 2017)

Girl, eight, with three rare conditions raises money for other sick kids (Deadline News, August 13, 2015)

Swimmer Tayla Clement has plenty to smile about, but can’t show it (stuff.co.nz, August 8, 2015)

Chef too scared to leave the house after being called ‘ugly’ and ‘retarded’ due to rare neurological condition is finally cured of agoraphobia by hypnotherapy (The Daily Mail, July 21, 2015)

Family of boy unable to smile thank fundraisers and local businesses for donations (Clydebank Post, June 30, 2015)

Exome Sequencing Uncovers De Novo Mutations in Individuals With Rare Facial Paralysis Syndrome (June 12, 2015)

Former Virginia Tech wide receiver juggles fatherhood, first-time coaching (Roanoke Times, May 24, 2015)

Mother raises awareness of rare syndrome that leaves her toddler unable to move his face (The Daily Mail, January 27, 2014)