The Vanderbilt Autonomic Dysfunction Center has a close relationship with the Shy-Drager Syndrome/Multiple System Atrophy Support Group (SDS/MSA), a national charity group focused on helping people with Shy-Drager Syndrome and Multiple Systems Atrophy. This group is a tremendous resource to patients and caregivers, providing an informational website, regional patient/caregiver meetings, a toll-free telephone line and representation at national physician meetings. Click on the hypertext link below for additional information.
SDS/MSA Support Group
In May 1995, the Vanderbilt Autonomic Dysfunction Center initiated a free Shy-Drager Syndrome electronic mail list so that patients with multiple system atrophy (MSA) and their caregivers could communicate with each other throughout the world. The electronic mail list is open to patients, caregivers, and others who are interested in the Shy-Drager syndrome. Through use of the electronic 'party line', anyone can ask a question, answer a question, post information on medication and treatments, share the good and the bad times, etc. A person with a computer and access to email can join the list by subscribing or by having a friend or relative subscribe and relay messages to the list. The list has evolved over time and now contains over 900 subscribers. To subscribe to the mail list, click on the hypertext link below and follow directions:
Shy-Drager Syndrome Electronic ListServer
Visit them on the Web at www.OIresource.org.
Syncope Trust And Reflex anoxic Seizures - 'The Blackouts Trust' - working together with individuals, families and medical professionals to offer support and information on syncopes
* Information & reports on the various types of syncopes (including Vasovagal Syncope, NCS, NMS & RAS)
* Videos showing natural attacks
* Linking with similarly affected individuals and families
* Information leaflets and literature
* Newsletters & monthly e-bulletins
* Regional, national and international meetings
* Freephone 24 hour helpline
* Professional Development Awareness Programmes
All publications are available in various languages upon request.
The Dysautonomia Information Network (DINET) helps people with postural orthostatic tachycardia syndrome, neurocardiogenic syncope, pure autonomic failure and multiple system atrophy. DINET helps by providing educational material, sponsoring a worldwide program that puts both patients and caregivers in touch with others in their vicinity who have been affected by dysautonomia, publishing a quarterly newsletter dedicated to providing patients with the latest in research and treatments, maintaining a moderated online forum where patients can discuss topics related to dysautonomia, directing patients to support groups in their area and surveying physicians worldwide to include on their Website's physician list. Visit them on the Web at www.dinet.org.
The National Dysautonomia Research Foundation (NDRF) was established to assist those who suffer from any of the various forms of Dysautonomia.
The Mission of NDRF is:
- To provide educational support for those who are afflicted with any of the various forms of dysautonomia.
- To further the advancement of medical and scientific research on the cause of and the treatments for dysfunctions of the Autonomic Nervous System.
- To provide a referral network of physicians and medical facilities that specializes in this area of medicine.
- To provide information on Dysautonomia to those who are afflicted and to other interested parties through books, videos and the Internet.
- To act as an advocate on behalf of those who are afflicted with any of the various forms of dysautonomia to raise public awareness of these conditions.
Linda J. Smith
Daniel P. Smith