Living Rare Study
Status: Currently Enrolling
The Living Rare Study will transform patient experience data into a unified voice that can drive solutions, empower advocates, and strengthen community.
Sign Up
Registration is now open for the Living Rare Study, the first large-scale study in the United States to track the evolving experiences of thousands of individuals and caregivers impacted by rare disorders. This study will be hosted on NORD’s IAMRARE platform.
Living Rare Study Overview
What is the purpose of the study?
This study will examine how the experiences and challenges of people impacted by rare disease changes over time.
Who can participate?
People living in the U.S. who have been diagnosed with a rare disease or suspect they may have one. Parents and caregivers with legal authorization to make decisions for individuals living with a rare disease are encouraged to participate in the study.
Where is it being conducted?
Online through the National Organization of Rare Disorders (NORD) platform.
What must I do if I’m in the study?
Fill out an online survey that takes about one hour to complete. Each year, reminders will be sent to participants to update their survey with any changes in their health or circumstances.
What are the benefits of the study?
This study seeks to gather the data necessary to improve care, shape effective healthcare policies, and identify resources needed to support the 30+ million Americans living with a rare disease.