Questions about the Living Rare Study
If you are a patient or caregiver, and have questions about the study, be sure to visit our FAQ page for more information. If you have additional questions or you’ve already submitted your survey, and realize that you may have given inaccurate information (such as disease name, diagnosis, testing, location of care, etc), please notify the study team at LRStudy@rarediseases.org .
Questions for NORD®
If you have general questions about the National Organization for Rare Disorders (NORD) please visit our Contact page.
Collaborate with Us
Are you a researcher or company interested in working with NORD and the Living Rare Study? Contact the Study team at LRStudy@rarediseases.org to discuss potential opportunities.