Patient Support and Advocacy Groups

National Dysautonomia Research Foundation (NDRF)

The National Dysautonomia Research Foundation (NDRF) was established to assist those who suffer from any of the various forms of Dysautonomia.

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Dysautonomia Network (DINET)

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.

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STARS - Syncope Trust and Reflex Anoxic Seizures

Syncope Trust And Reflex anoxic Seizures - 'The Blackouts Trust' - working together with individuals, families and medical professionals to offer support and information on syncopes.

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Dysautonomia International

Dysautonomia International is a 501(c)(3) non-profit organization committed to dysautonomia Awareness, Advocacy and Advancement. Their website offers summaries of the different types of dysautonomia, links to the most recent journal articles, an Autonomic Disorders Video Library, exercise and dietary tips, school and workplace accommodations, downloadable educational materials, and several ways to connect with other dysautonomia patients

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OI Resources is a patient support website for patients with chronic orthostatic intolerance (OI) or the Postural Tachycardia Syndrome (POTS).

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Shydrager: Multiple System Atrophy 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 almost 2000 subscribers.

To subscribe to the mail list, click on the hypertext link below and follow directions:

The Multiple System Atrophy Coalition™ (Formerly The SDS/MSA Support Group)

The MSA Coalition also provides much needed patient and caregiver support, an annual conference, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community.

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