In Salt Lake City, on July 24, 2025, the Moebius Syndrome Foundation announced the launch of the Moebius Syndrome Foundation Research Registry.

The Moebius Syndrome Foundation launched the Moebius Syndrome Foundation Research Registry with NORD’s IAMRARE® Program! Each participant in the registry plays an important role in advancing Moebius syndrome research. The information they provide will help guide the development of new treatments and expand our understanding of this rare condition.

The Moebius Syndrome Foundation will continue to share more information about this registry  and how to participate in the next few weeks.

You can learn more about the Moebius Syndrome Research Registry at: https://moebius.iamrare.org

If you have questions about the registry, please contact: registry@moebiussyndrome.org.

—
Image description: On a purple background with orange designs, the text, “Curious to learn more? Moebius Syndrome Foundation Research Registry.” Moebius Syndrome Foundation logo.