 LINKS----LINKS----LINKS
American Autonomic Society
This is an organization that brings together experts, from diverse disciplines who share an interest in the treatment and prevention of autonomic nervous system disorders (such as dysautonomia).
Center for Hypotension-New York Medical College
This is the website of the clinic of Dr. Julian Stewart, a physician and advocate who treats children with dysautonomia. This outstanding facility and doctor need more research funding.
Dysautonomia Clinical Trials, per the National Institutes of Health
Periodically check this website for updated research developments. This is also a good source for the expanding number of doctors who are performing dysautonomia research and treatment in various parts of the country. If you have trouble using this website see your local public librarian for assistance.
Dysautonomia Information Network
This is an excellent informational and support group for people with dysautonomia, especially those with postural tachycardia syndrome (POTS). To quote its website, "This disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up."
Dysautonomia, National Inst. of Neurological Disorders & Stroke
This is the leading federal government dysautonomia research facility.
Dysautonomias--Report of the National Institutes of Healths' 2002 Symposium
The recommendations of this symposium, as to increased non-familial dysautonomia disease awareness and educational efforts, had not generally been followed or implemented. However, the administration of the National Institutes of Health suggests that many of the recommendations are in the process of being effectuated in 2009 and 2010. The recommendations are reproduced, below, while the summary of the entire conference is available by clicking on the link above:
The first workshop on dysautonomia successfully concluded with all attendees agreeing on several issues: (i) that it is imperative to expand clinical and basic research and put emphasis on translational research; (ii) to endorse patient advocacy and improve awareness and education; (iii) to develop resources that will aid research and treatment strategies, and possibly establish collaborative broad scale efforts in the form of multi-project applications and grants and multi-site efforts; (iv) to encourage collaborative efforts and enhance data sharing and management; (v) and to hold regular, follow-up scientific meetings.
DYNA-Dysautonomia Youth Network of America
This is a wonderful advocacy/support organization for young people with dysautonomia.
Dr. Blair Grubb
This is a link to contact information for Dr. Grubb, a researcher/physician who treats non-familial dysautonomia at the University of Toledo Medical Center's Cardiovascular Medicine Clinic.
Mayo Clinic: Dr. Phillip Low and Dr. Philip Fischer
These are Mayo Clinic websites with contact information for Dr. Phillip Low and Dr. Philip Fischer, both physician/researchers who treat patients with non-familial dysautonomia. Dr. Low treats adults and Dr. Fischer treats children.
Mayo Clinic researchers were the first, in the world, to recognize the existence of non-familial dysautonomia (NFD). It was diagnosed in adults in 1993 and in children in 1999. In 2006 they affirmed that the number of people who have non-familial dysautonomia is far greater than suspected, even as recently as 2002. Additionally, many people "diagnosed" with migraine headaches (or chronic fatigue syndrome) may in fact have NFD.
National Dysautonomia Research Foundation
A support group and advocacy organization. Its website has information about NFD, in particular, and autonomic nervous system disorders in general.
National Library Service
Provides free books on tape (and a machine to play the tapes) for many people with disabilities. Those with dysautonomia, who find it easier to listen to an audio book, as opposed to sitting up and reading, qualify for free services. This link helps you to locate the closest library to you. Don't be put off if the local facility is called the Library for the Blind. If you have any questions, please contact us.
Vanderbilt Medical Center-Autonomic Dysfunction Center
This is the website of what is in part a non-familial dysautonomia (NFD) research facility. Its staff includes Dr. David Robertson, a physician who treats adults with NFD. The latest information suggests that the Vanderbilt researchers support Mayo Clinic NFD researchers' comments that literally millions more Americans have NFD than previously suspected.
The Wiggles, Greg Page, and the Baker IDI Heart & Diabetes Institute
Greg Page, co-founder and former star of one of the world's most popular children's performance groups, The Wiggles, explains why he had to retire due to a type of non-familial dysautonomia (orthostatic intolerance). As is typical, Mr. Page was not correctly diagnosed for years after disease onset. Mr. Page is funding orthostatic intolerance research at the Baker IDI Heart & Diabetes Institute in Australia.
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Disclaimer: If you have any health problem you should seek the assistance of a qualified medical professional. Our efforts, to raise funding for research and to increase dysautonomia awareness, are not a substitute for capable medical care. At the same time information cited, about problems with accurate diagnosis, is correctly summarized.
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