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 research@rarediseases.org.