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OUR MISSION

The Moebius Syndrome Foundation's mission is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

For Parents

Was your newborn recently diagnosed with Moebius syndrome? Have an older child with Moebius?

For Professionals

Healthcare professionals, researchers and those who want more information on Moebius, click here »

For Adults and Young Adults

Interested in getting involved or connecting with others living with Moebius?
Learn more »

For Friends and Relatives

Learn about Moebius syndrome and ways you can support your loved one.
Learn more »

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Do you know about IRA Rollover-Qualified Charitable Deductions(QCD)?

Posted by Moebius Foundation
A QCD is a direct transfer of funds from your IRA custodian, payable to a qualified charity. QCDs can be counted toward satisfying your required minimum distributions (RMDs) for the year, as long as certain rules are met. In addition to the benefits of giving to charity, a QCD excludes the amount donated from taxable income, which is unlike regular withdrawals from an IRA. Keeping your taxable income lower may reduce the impact to certain tax credits and deductions, including Social ...READ MORE »

REQUEST FOR APPLICATIONS: Grant Proposal to Study Moebius Syndrome and Sleep Disorders

Posted by Moebius Foundation
REQUEST FOR APPLICATIONS: Grant Proposal to Study Moebius Syndrome and Sleep Disorders The MSF Grant Program provides seed-money grants to qualified investigators for scientific and/or clinical research.  The Moebius Syndrome Foundation has identified a need for additional investigation into the role of Moebius syndrome and sleep disturbances.  Anecdotally, many persons with Moebius syndrome have described difficulties with sleep, including, but not limited to, difficulty falling asleep, difficulty staying asleep, night terrors, sleep walking, sleep apnea, and decreased quality of sleep.  The ...READ MORE »

Eidikology: proposition for a new terminology for the science of rare diseases

Posted by Moebius Foundation
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 »