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Rare IA Recruitment Assets 2023, logo, zebra stripes, gradient, "A Rare Disease Survey"

Rare In America: What's That?

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By Editorial Team

2 min read

The Rare In America survey is now closed.

A diagnosis of spinal muscular atrophy (SMA) can be isolating, bringing many questions to the forefront. To learn more about the challenges of living with SMA, we are conducting our Rare In America survey. By taking our survey, you can bring awareness to the realities of life with SMA and help others feel less alone.

What is the survey about?

The survey covers “basics” like your diagnosis and treatment experiences, but also dives into the nuances of SMA, like the emotional impact and day-to-day challenges. In addition, you’ll have the opportunity to not only tell us about SMA but also any other conditions you are living with and how each impacts your life.

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

Why should you take the survey?

Each person who takes the Rare In America survey contributes to a better understanding of SMA as well as other health conditions. With better knowledge, we can help others who are navigating health challenges feel less alone. We hope to capture a full picture of all aspects of your health experiences and bring greater awareness to conditions that may be misunderstood. Sharing your experiences through the survey can reveal how similar each person’s journey is, as well as the differences that make each journey unique.

What will the survey ask me?

The survey will ask about different moments of your journey with SMA, including:

  • Diagnosis
  • Symptoms and symptom management
  • Quality of life
  • Treatment awareness and experience
  • Other diagnosed conditions

We do not require your name, address, or other personal information for you to participate. You also do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return to it when you are able. You may continue where you left off.

How do we use the Rare In America survey data?

Survey responses help us and our partners better understand the SMA community. All survey responses remain confidential, reported only in total. This means your specific responses will not be reported individually. All information will become property of Health Union, LLC.

Throughout the year, we may highlight important findings and develop new content based on what we learned from the survey. We hope this contributes to the information available to those in our community and helps you connect with others who walk the same path.

Sharing your story can make a difference, and we believe each story can change how others understand life with SMA.

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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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