About Us

DSN is a U.S. based, 501(c)(3) non-profit whose mission is to provide a community that empowers and supports those affected by dysautonomia to live their best lives.

Empowerment

 

We try and help our members live their best lives.  We recognize the importance of patient self-sufficiency, so DSN works to provide resources that support our members efforts to advocate for themselves. These resources include shared information on work and school related accommodations, assistive technology, proclamation kits, and partnerships with other organizations that advocate for patients.

DSN also empowers patients by providing resources to increase their knowledge so they feel confident in managing their conditions. Our website provides a patient handbook that is particularly helpful upon initial diagnosis. We have educational libraries of brochures, videos, journal articles, work and school-related resources, and blog posts to inform our members and support them in sharing information about their conditions with those around them. One of our most used resources is our member provided Medical Provider Directory and Interactive Map, which helps individuals find medical professionals in their area who are familiar with treating all aspects of dysautonomia and related conditions.

 

We also hold virtual and live walks and events to allow patients the opportunity to stretch themselves personally, and to raise awareness among their family, friends, and community.

Our leaders and volunteers seek new members to join their teams. In joining, new volunteers are provided training, support, and a fun community working together to support our mission.

Support

DSN provides our members all over the world with safe spaces to discuss their conditions, goals, struggles, joys, and hobbies. 

 

Our private, members-only groups include:

 

On a local level, DSN provides members with ways to gather together - both virtually and in-person.  Members often host gatherings, walks, fundraisers, and other social events as a way to have fun and encourage one another.

DSN believes that one of our most important roles in supporting our members is to increase education about and awareness of Dysautonomia for our members and the community beyond. We approach education and awareness in two ways - by working with healthcare professionals and by working directly with members of the DSN community.  The DSN Education & Awareness Team is passionate about educating health care providers about the evaluation and treatment of dysautonomia. Examples include presentations to medical students, state conference presentations for occupational therapists, hosting a table at the NIH Rare Disease Day, and many others.