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.

Inspire Rare Disease Group

NORD partnered with Inspire to create a Rare Disease Support Community.  This free online service is for rare-disease patients, their families, and caregivers.  It is a place where people can find and support one another, share stories, and build a network of online friends. Visit the Inspire community.

EURORDIS/NORD Rare Disease Communities

NORD and the European Organization for Rare Diseases, EURORDIS, host global online communities at rarediseasecommunities.org.  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.

International Rare Disease Blog

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.

Rare Disease Day US

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.