Your Experience Can Shape the Future
Join the Living Rare Study
About the study
Share your story and help us create a better future for the 30+ million people living with a rare disease in the United States.
Join the first ever large-scale study in the U.S. examining how the experiences and challenges of people impacted by rare disease changes over time. Rare disease is a public health issue, but we lack the data to prove it. By participating in the study and sharing your information, you'll help us show the significant unmet needs of the community, find solutions and advocate for greater support.
How it works
Click on an icon to learn more.
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Register to participate in the Living Rare Study
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Take the survey
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Receive yearly reminders to update your responses
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Participate in new surveys analyzing critical aspects of the rare disease experience
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Receive updates on study insights
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Share the Living Rare Study with your network!
Why the study matters
The Living Rare Study will transform patient experience data into a unified voice that can drive solutions, empower advocates and strengthen community.
Data collected will be used to:
Identify key issue areas that will inform the development and evolution of NORD programming created to improve well being and quality of life.
Transform lived experiences into facts that will illustrate the impact of rare disease for key decision makers.
Leverage the strength of our collective voices in advocating for a better future for all impacted by rare diseases.
Who should participate
Anyone who lives in the United States and has been diagnosed with a rare disease, suspects they have a rare disease, or is a caregiver of someone with a rare disease can participate.
The more people who join the Living Rare Study, the more powerful the data becomes –
helping fuel changes that the rare disease community needs and deserves!
