The National Organization for Rare Disorders (NORD) is conducting a survey to collect data about the diagnosis and care of people with rare diseases. NORD first conducted the survey in 1989 and then again in 2003. This is a follow up survey to help NORD and policy makers better understand the needs and experiences of people with rare diseases. The survey takes approximately 5 to 10 minutes. To participate, go to: https://www.surveymonkey.com/r/8BP2H9W