The European Union defines a disease as rare when it affects fewer than 5 per 10 000 persons,1 whereas the USA considers a condition rare if it affects fewer than 200 000 individuals.2 To date, however, there is no terminology to appropriately address these diseases as a category other than rare diseases, or in some instances orphan diseases when referring to conditions that lack the resources for treatment discovery. Even though these terms have helped thus far to describe ...READ MORE »

MEDIA RELEASE: For Friday 17th May 2019 Campaign for face equality ‘becomes a global movement’ with the first International Face Equality Week The Moebius Syndrome Foundation is pleased to announce a week of awareness-raising events, media coverage and social media activity begins around the world today to promote ‘Face Equality’ — the fair treatment of people with facial and body differences and the elimination of disfigurement discrimination. The 30 NGOs that are members of Face Equality International, the new alliance representing people ...READ MORE »

2 news segments featuring Kelsey Ferrill! https://globalnews.ca/video/rd/1431249475649/ Embracing visible differences: 2 Albertans with Moebius Syndrome share valuable lessons It was a brave step into the spotlight for a young woman living with a condition that makes her look different, but the Calgary woman is going beyond her comfort zone to give others a lesson on how to treat people with differences. Jill Croteau reports. Kelsey Ferrill knows firsthand what it’s like not looking like most people. The 28-year-old has spent her life making ...READ MORE »

The Moebius Syndrome Foundation is pleased to announce that four new members have been added to the Board of Directors:   Bryn Webb, MD, New York City        Dr. Webb is Board Certified in Clinical Genetics and Pediatrics and is Assistant Professor in the Department of Genetics and Genomic Science & Pediatrics at the Ichan School of Medicine at Mt. Sinai Hospital in New York City.  She is also the Co-Director of the Cleft & Craniofacial Clinic at Mt. Sinai Hospital, and is ...READ MORE »

An adult within our community brought this fantastic suggestion forward – thank you! They wanted a simple card to carry with them that explains Moebius syndrome. It is business-card size, so it will easily fit in your wallet. Easy to give to a doctor, a teacher or a friend. The Moebius Syndrome Foundation website is on the card so people can get more information. This Moebius syndrome informational card is now available to download here (just right click and save as) ...READ MORE »