Moebius Syndrome Foundation Partners with NORD® to Initiate Natural History Study of Moebius syndrome
Denver, Colorado, October 3, 2025 — The Moebius Syndrome Foundation (MSF) has partnered with the National Organization for Rare Disorders (NORD) to plan and build a study to research Moebius syndrome.
“As a mother of a child with Moebius syndrome and physician, I personally have had so many unanswered questions over the years of my Moebius journey. This new tool for patient-centered research gives all individuals with Moebius, or their family or caregivers, a chance to add their voice to the search for more understanding and better clinical choices in the management of the varied facets of Moebius syndrome,” states Moebius Syndrome Foundation Board Member, Kathryn Kraus McClure, M.D.
The study, designed by researchers, medical experts, and patients, will provide the opportunity for patients around the world to share information about Moebius syndrome to be used in future research. Moebius syndrome is a rare disorder that occurs in an estimated 2 to 20 per million births. It causes facial paralysis or weakness, as well as limited outward horizontal movement of one or both eyes. This condition can result in speech, feeding and respiratory difficulties, limb differences, and other symptoms. It is a congenital, non-progressive disorder that affects individuals from all walks of life.
“We are thrilled to launch this groundbreaking registry in partnership with NORD. Moebius syndrome is an incredibly rare condition, yet its impact on individuals and families is profound. This registry has been a long time in the making, and it’s something our community has urgently needed. By providing patients with a platform to share their experiences and data, we are laying the groundwork for vital research that can lead to a deeper understanding, more effective treatments, and ultimately, an improved quality of life for those living with Moebius syndrome. This is a pivotal step forward for our community,” stated Jenny Whitman, Executive Director of the Moebius Syndrome Foundation.
This natural history study will be hosted on NORD’s IAMRARE® online platform. It is designed to track the course of Moebius syndrome over time in a set of electronic surveys. Patients, or their caregivers or guardians, will enter information from anywhere in the world. The data, owned by the MSF, is confidential and stored securely on the platform. The MSF will determine which institutions and individuals receive the data. One goal of the MSF is to share the collected data with individuals or institutions conducting research or therapeutic options for Moebius syndrome.
“This study applies a rigorous, longitudinal approach to capture data reported by individuals with Moebius syndrome or their caregivers across the full clinical spectrum, including neurological, ophthalmologic, surgical, developmental, and psychosocial domains. The depth and scope of this registry will support meaningful insights and help guide more informed, evidence-based care,” said Dr. Bryn Webb, clinical geneticist, pediatrician, MSF board member, and Principal Investigator of the study.
The Moebius Syndrome Foundation is launching this study in collaboration with NORD, an independent nonprofit that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. The MSF is a member of NORD, and these two organizations will collaborate to understand the challenges of Moebius syndrome and identify opportunities to advance research for this rare disease patient population.
“Many adults with Moebius syndrome understand the challenges of having a rare condition and not finding the answers that are needed when seeking medical treatment. This registry will advance our collective understanding of Moebius and benefit the community. I applaud the work being done to make this a reality,” states former MSF Vice President Steven Maldonado.
For more information, please visit www.moebiussyndrome.org.
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About Moebius Syndrome Foundation
Moebius Syndrome Foundation, a 501(c)(3) organization since 1994, is the largest organization in the world supporting individuals and families living with Moebius syndrome. The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, to promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research that advances the diagnosis and treatment of Moebius syndrome and its associated conditions.
About National Organization for Rare Disorders, Inc. (NORD®)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.
Media Contact: Jenny Whitman, Executive Director Moebius Syndrome Foundation
+1-844-663-2487 ext. 703 or jenny@moebiussyndrome.org
1312 17th Street, #976
Denver, CO 80202
NORD Marketing, media@rarediseases.org
