|Dysautonomia International is a 501(c)(3) non-profit organization run entirely by volunteers. Our volunteers include patients, family members, friends, physicians, researchers, and other health professionals. We have a Board of Directors, a Medical Advisory Board, and a Patient Advisory Board, as well as many other volunteers. Our main offices are in New York and Maryland, but we have volunteers all across the US and in several other countries.
Our Work - Awareness, Advocacy, Advancement
Dysautonomia International may be an all volunteer organization, but our volunteers are hard at work. We help organize events around the globe each October for Dysautonomia Awareness Month. We hold a large annual conference each summer during which dysautonomia patients, family members and experts from around the world to join together for a weekend of educational programming, fun social events, and grassroots dysautonomia advocacy. We educate medical professionals about autonomic disorders. We fund medical research on POTS and work with researchers to speed up the pace of discovery.
One theme that overlaps with all of our work is the need to involve patients in the process. We believe that patients who live with a chronic illness are great untapped source of knowledge. Throughout the year, we connect patients and families with one and other through email, social media and in-person events. We empower patients to become their own best advocate, and provide a platform for those who want to advocate for others.
History of the Organization
We began in 2012 as a group of parents and patients who wanted to make a difference in the lives of other families dealing with various forms of dysautonomia. We have all had our own difficult journeys and found comfort and strength in speaking with others going through the same thing, educating ourselves with accurate medical information, and eventually becoming fluent enough in the language of dysautonomia to be able to help direct other patients towards useful resources.
As the organization continues to grow, we looking forward to funding additional research and providing additional resources to the dysautonomia community.