Online Patient Communities
Online patient communities provide opportunities to make connections with others experiencing the same challenges. Communities provided by known and trusted sources can be an important source of information and support, and provide a forum for helpful discussion and sharing of resources.
NORD and the European Organization for Rare Diseases, EURORDIS, host global online communities at . The communities are created in partnership with disease-specific patient organizations. These communities help patients understand their condition and connect with others. They also provide tools for living with rare diseases. A unique feature of this site is that it includes translation into five languages. View the current communities.
RareDiseaseBlogs.net is hosted by NORD and EURORDIS together. Public policy and thought leaders on both sides of the Atlantic share their insights on topics of mutual interest. Thinking globally is especially important with rare diseases. This site provides a place to share concerns and opinions on issues of the day. View the blog.
As the national sponsor in the U.S. for Rare Disease Day, NORD hosts a special website and a Rare Disease Day US Facebook page where individuals may share thoughts and ideas year-round on ways to enhance the impact of this international advocacy day. View the website.