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NMO in America: What is That?

Last updated: April 2022

Editor's note: the NMO In America Survey is now closed. Thanks to all who participated!

It can take years to receive a diagnosis of neuromyelitis optica spectrum disorder (NMOSD), often while experiencing frequent and debilitating symptoms. To learn more about the challenges of NMOSD and to give a voice to those affected, we are conducting our NMO In America Survey.

What is the survey about?

The survey covers basics like diagnosis and treatment experiences, but it also dives into issues like the emotional impact and day-to-day challenges of managing NMO. We hope to learn more about all things NMO, including complementary and alternative treatments, diet and nutrition, symptoms, and quality of life.

Why should I take the survey?

Each person who takes the survey contributes to a better understanding of NMO and can help others who are dealing with NMO feel less alone. Sharing your experiences through the survey can reveal the similarities and differences of each person’s journey with NMO. In total, this can bring greater awareness to this rare condition.

What will the survey ask me?

The survey will ask about diagnosis, symptoms, symptom management, quality of life and relationships, engagement with doctors, and treatment awareness and experience. We do not require your name, address, or other personal information.

Please note that you do not have to take the survey all at once. Feel free to bookmark the survey in your web browser and return when you are able. You will resume where you left off.

How do we use the In America Survey data?

Survey responses help us and our partners better understand the NMO community. All survey responses are kept confidential, reported only in total (your specific responses will not be reported individually), and will become the property of Health Union, LLC.

What happens after I take the survey?

After the survey closes each year, the Editorial Team at Neuromyelitis-Optica.net takes your responses and creates an infographic to share the community's responses and highlight important findings from the survey.

But that is not all. Throughout the year, we publish articles and videos based on learnings from the survey, like this one about dealing with the complications of NMO. We hope this survey-driven content contributes to the information available to those affected by NMO and helps them connect with others on the same journey.

One voice may seem like it will not make a difference, but each voice can change how others perceive life with NMO and bring comfort to someone coping with a diagnosis.

Still have questions? Comment below, or email us at contact@neuromyelitis-optica.net for more information.

By providing your email address, you are agreeing to our privacy policy.

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