Nord 2022 research survey sticky post

NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

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At NORD, we know that patient-powered initiatives change the world. Our priority is advancing rare disease research and innovation by working together to overcome critical challenges. 

In 1989 and again in 2003, NORD conducted a survey to better understand the barriers and facilitators of rare disease diagnosis, care and treatment in the United States. Today, NORD is conducting a 30 year follow-up to compare the information over time.

Please click here to participate and share your journey. We appreciate your time! 

The survey should take about  5-10 minutes to complete. If you have any questions please reach out to