About Us

Incorporated in 2016, Dysautonomia Support Network (DSN) is a US based volunteer-run 501(c)(3). Our mission is to EMPOWER, EDUCATE, and ADVOCATE for patients affected by the many forms of dysautonomia and related conditions. DSN strives to improve the quality of life of patients worldwide by increasing the understanding of the disorders and dispelling misunderstandings that many medically complex patients face in society.

Empowerment

 

DSN provides our members in over 50 countries with safe spaces to discuss their conditions, goals, struggles, joys, and hobbies. 

 

Our members-only groups include:

 

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

 

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.

Education

 

DSN educates 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 articleswork 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, which helps individuals find medical professionals in their area who are familiar with treating all aspects of dysautonomia and related conditions.

 

Advocacy

DSN believes that one of our most important roles is to advocate for our members and the community beyond. We approach advocacy in two ways, by working with healthcare professionals and policy makers and by working directly with members of the DSN community.

 

The DSN Advocacy 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. 

 

We recognize the importance of patient self-sufficiency, so DSN works to provide resources that support our members efforts to advocate for themselves and their communities. These resources include shared information on work and school related accommodations, assistive technology, proclamation kits, and partnerships with other organizations that advocate for patients such as Backpack Health. We also hold an annual Virtual 5K Race and live walks to allow patients the opportunity to stretch themselves personally, and raise awareness among their family, friends, and community. Finally, to help our members accomplish their life goals, DSN provides academic scholarships and service dog grants that community members can apply for annually.

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