Barriers and Facilitators to Rare Disease Diagnosis, Care and Treatment: 30 year Follow-up Survey

The Orphan Drug Act defines a rare disease as a condition affecting fewer than 200,000 individuals within the United States. Today, there are over 7,000 known rare diseases that affect 25-30 million Americans. The National Organization for Rare Disorders (NORD) conducted a survey in 1989 and again in 2003 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 survey to compare these barriers and facilitators over time.

The estimated time to complete the survey is 5-10 minutes. If you have any questions prior to beginning, please email research@rarediseases.org. To participate in the survey, please continue.

We appreciate your time!

Question Title

* 1. Have you or a family member been diagnosed with a rare disorder?

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