Join us on Rare Disease Day, February 28, to learn more about how to find consumer health information on rare diseases.
There are nearly 7,000 diseases that are considered rare. While there may be few people diagnosed with any one rare disease, collectively the number of people in the United States diagnosed with rare diseases is estimated to be between 25-30 million. Patients diagnosed with rare diseases often face many challenges including difficulty finding consumer-level health information about their rare conditions. Participants in this workshop will learn how to find consumer health information about rare diseases. During the workshop, the instructor will demonstrate several freely available online resources that can be used to find reliable consumer health information including: MedlinePlus, National Organization for Rare Disorders, Genetics and Rare Diseases Information Center, and Genetics Home Reference.
Participants will learn about information challenges faced by patients diagnosed with rare diseases, will learn how to evaluate critically health information found online, and will learn how to find reliable information. At the end of the workshop, participants will be familiar with several vetted free and reliable resources for finding consumer health information about rare diseases.