Rare Disease Community

Build a Network of Support

To build your network of support, look to make connections with other LEMS patients, if possible, and with the rare disease community.  There are 7,000 identified rare diseases affecting more than 30 million people in the U.S. and 350 million people worldwide. Both Global Genes and Muscular Dystrophy Association may be able to help you make personal connections, and you can join the LEMS Community.

Social media offers a way to communicate and connect with others regardless of geography. Participate in Rare Disease Day and (http://www.rarediseaseday.org/), an annual event where patients, advocates and hundreds of patient organizations around the world shine a spotlight on rare disease through awareness activities and events. These types of connections can be both comforting and empowering. 

At a recent LEMS patient education meeting, Jean Campbell, a nationally recognized patient advocate with a background in nonprofit management, fundraising and corporate relations, presented the session, Finding Support Within Your Community and you can view the session below.

 


Learn more about Patient Education Meetings and the LEMS Community. And, visit LEMS Resources for important connections as well.