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Rare Disease In America: What's That?

Last updated: July 2023

Editor's Note: The Rare Disease In America survey is currently closed. To stay informed about survey results and when the next survey will open, be sure to subscribe to our newsletter.

Are you living with a rare disease? No matter where you are in your rare disease journey, we want to hear from you.

To learn more about the challenges of living with a rare disease, we are conducting our In America survey. By taking our survey, you can bring awareness to the realities of life with a rare disease and help others feel less alone.

What is the survey about?

The survey covers basics like diagnosis and treatment experiences but also dives into the nuances, like the emotional impact and the day-to-day challenges of managing a rare disease. We hope to learn more about all things rare disease, including quality of life, costs, and complementary and alternative treatments you may have tried.

Why should you take the survey?

Each person who takes the In America survey contributes to a better understanding of rare diseases. 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 a rare disease, 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 when you are able. You may continue where you left off.

How do we use the In America survey data?

Survey responses help us and our partners better understand the rare disease 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.

What happens after I take the survey?

After the survey closes each year, RareDisease.net will share the responses back to the community and highlight important findings from the survey.

But that is not all. Throughout the year, we publish articles and videos based on what we learned from the survey. We hope this survey-driven content contributes to the information available to those affected by a rare disease and helps you all 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 a rare disease.

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

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