Working to improve the quality of life for patients and their families through integrated clinical practice, education and research.
Mission
The Dysautonomia Advocacy Foundation is an organization consisting of an open forum dedicated to the dissemination of information regarding the group of disorders organized under the common heading of dysautonomia. The Dysautonomia Advocacy Foundation wishes to be part of the greater effort that allows connections to credible sources of information regarding diagnostic criteria and treatment opportunities.
The open forum design encourages those who suffer with the symptoms characteristic of dysautonomia to share their experience with their own illness, leading to a greater individual and related community understanding.
These goals are in accord with the fact that this is a complex group of illnesses, the nature of which is not well understood. In that established diagnostic criteria are limited, the incidence of the various forms is not known. These realities contribute to a lack of focused sophistication within the medical community making it difficult for many patients to find adequate care or even validation.
The Dysautonomia Advocacy Foundation consists of a director, herself a patient with dysautonomia, and a small advisory group consisting of community business and professional leaders who have agreed to serve without compensation. The Dysautonomia Advocacy Foundation has available to it a medical advisor, a university faculty physician with interest in dysautonomia. This director has also agreed to serve without compensation.
The Dysautonomia Advocacy Foundation will aide in funding programs geared towards educating the medical community about the signs and symptoms of dysautonomia. Further, we would like to aide in funding a forum for Specialist trained in the field of dysautonomia to draft and implement an accepted educational document aimed to help primary care physicians in the art of taking a history on a patient with dysautonomia.
We will work with other Foundations whose goals are to help further educate patients about the early signs of autonomic dysfunction. Allowing them to find credible resources to bring to the primary care physician.
We believe that working with other foundations as TEAM, we will Inspire Hope to those who need it, Raise awareness, and Educate the medical community at large about all forms of dysautonomia.