Rare In America: What's That?

The "In America survey" is now closed.

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 Rare 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 your diagnosis and treatment experiences, but also dives into the nuances of rare diseases, like the emotional impact and day-to-day challenges. In addition, you’ll have the opportunity to not only tell us about your rare disease but also any other conditions you are living with and how each impacts your life.

Why should you take the survey?

Each person who takes the Rare In America survey contributes to a better understanding of rare diseases 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 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 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 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.

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 a rare disease.

Still have questions? Email us at contact@raredisease.net for more information.