- Who We Are
- About Moebius Syndrome
- Living With Moebius Syndrome
- Science & Healthcare
- Events
The Moebius Syndrome Foundation and the National Organization for Rare Disorders (NORD) have teamed up to study Moebius syndrome. The Moebius Syndrome Foundation Research Registry will collect data and information about living with Moebius syndrome, and use it to uncover new insights into how to better treat and care for people with Moebius syndrome.
Each person who participates in the registry can make a significant impact on Moebius syndrome research. They will provide important information to aid in the development of new treatment options and enhance our understanding of this rare disease.
Register For the Moebius Syndrome Foundation Research Registry
The Moebius Syndrome Foundation Research Registry is a collaborative project between the Moebius Syndrome Foundation (MSF) and the National Organization for Rare Disorders (NORD).
Through the IAMRARE Program, NORD offers the MSF a way to host an online platform, which will allow the MSF to collect information about Moebius syndrome from people who live with the condition or their caregivers.
The Moebius Syndrome Foundation Research Registry is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the Moebius syndrome community through shared knowledge.
As the registry sponsor, the Moebius Syndrome Foundation will ensure that data privacy and confidentiality are strictly maintained. Participation in the Moebius Syndrome Foundation Research Registry is free and voluntary, and participants may withdraw at any time.
The Moebius Syndrome Foundation Research Registry is a powerful opportunity for individuals with Moebius syndrome and their family members to contribute directly to research that will enhance our understanding of Moebius syndrome, thus facilitating the development of new treatment options. Participation is especially vital given the rarity of Moebius syndrome – every individual’s experience makes a meaningful difference in advancing this research.
Image Description: A step by step infographic. Title: How it Works. Moebius Syndrome Foundation Research Registry. Step 1: Sign up. Start by signing up for the registry, at: https:moebius.iamrare.org. An image of a sign-up button. Step 2: Complete the Surveys. Choose a survey to complete. You can decide what information to share and what questions to answer. An icon of a person’s head, with a pencil, lightbulb, and star at the top of the head. Step 3: Upload Your Documents. Some of the survey questions may ask you for your medical records, photos, and/or videos. These questions are completely optional. Step 4: Database Collection. The registry will house everyone’s information together. Once many people sign up, research can begin! An icon of three documents going into a database barrel. Step 5: Research. Researchers will begin analyzing the data, looking for patterns, trends, and insights. The Moebius Syndrome Foundation decides who has access to the data. An icon of a person sitting at a desk, working on a laptop, with a desk lamp on. Step 6: Results. As researchers explore the data in the registry, they will publish their findings in medical journals and scientific publications. We all learn more about Moebius syndrome! An icon of a star with a checkmark inside. The Moebius Syndrome Foundation logo appears at the top of the infographic.
Presented by Bryn Webb, M.D. and Kathy Kraus, M.D.
October 2025
Data collected in the Moebius Syndrome Foundation Research Registry is managed by the Moebius Syndrome Foundation and its Board of Directors, and the National Organization for Rare Disorders (NORD), a nonprofit dedicated to the advancement of understanding of rare disease.
Scientists and researchers who are seeking to understand Moebius syndrome as a medical condition can request access to the research registry. Once approved, these organizations and researchers may explore the data available. They may also create their own unique survey, and share it with the Moebius community.
Information from medical records will be anonymized when shared with researchers outside of the Moebius Syndrome Foundation Scientific Advisory Board.
Once the scientists and researchers work with the data, we hope to uncover new insights and gain a better understanding of Moebius syndrome.
Image Description: A graphical image of the text to the left of this image. The graphic explains Where Does the Data Go? and has some light purple circles, and a computer graphic.
Watch this video to hear from researchers from other rare disease organizations about how they have used the data in their research registries, in partnership with NORD’s IAMRARE program.
Check out this video from NORD about the benefits of having a research registry.
Visit moebius.iamrare.org to start the surveys. Register your new account, or login as a returning user.
Select a survey to complete. You can take as much time as you need to complete each section.
How long will it take?
Plan for 30 minutes per survey. Some surveys may be more detailed and take more time to complete than others. Surveys can be done in smaller parts and saved. Doing all the surveys at once may take 1 – 2 hours.
What you need:
Some of the survey questions may ask you for your medical records, photos, and/or videos. These questions are completely optional and it is your decision whether or not to provide the information.
As you finish a survey, make sure to hit “submit” to share your data.
Image Description: A graphical image of the text to the left of this image. The graphic explains how to Get Started and has some light purple circles, and a graphic of cartoon people with a large clipboard representing a survey.
Learn more about the IAMRARE Program Powered by NORD
Learn more about the National Organization for Rare Disorders (NORD)