At NORD, our priority is advancing rare disease research and innovation by working together to overcome critical challenges. The input of patients and caregivers plays an integral role in getting beyond obstacles and moving towards a brighter future for the rare disease community.
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.
There is still time to take part in our follow-up survey. 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.