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Vanderbilt Autonomic Dysfunction Center

Patient Advocacy Groups

MSA CoalitionThe Multiple System Atrophy Coalition is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of assisting researchers to find a cure.  In the meantime, The Coalition also provides much needed patient and caregiver support, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community.  At present, 75% of all donations go directly into a dedicated Multiple System Atrophy Research Fund which now supports a research grant program.  The MSA Coalition also has a world-class scientific advisory board (SAB) to review and award research grants to the most promising MSA research proposals.

The MSA Coalition was originally organized as the Shy-Drager Syndrome (SDS)/Multiple System Atrophy (MSA) Support Group to respond to the needs of those affected by MSA.  The cornerstone of The MSA Coalition has been its annual patient/caregiver meeting.  To this day, the meeting remains very important as it provides a chance to see others in similar circumstances, face to face. The toll-free support line is also a continuing service provided by the Coalition.  Patients, caregivers and families can rely on The Multiple System Atrophy Coalition for emotional support and compassion as they face this horrible disease; and they can know a growing organization with thousands of supporters is advocating for recognition and pushing to urgently find a cure.

www.Multiple-System-Atrophy.org

 

Dysautonomia International

Dysautonomia International is an all volunteer 501(c)(3) non-profit organization that focuses on dysautonomia Awareness, Advocacy and Advancement of scientific research.  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. The website also contains an Interactive Global Dysautonomia Map that allows patients to find doctors with expertise in autonomic disorders in their area, add themselves to the map, locate regional support groups, and find dysautonomia related events.

Dysautonomia International organizes an annual Dysautonomia Patient Conference & Lobby Day in the Washington, DC area each summer. The annual conference brings together patients and families with leading researchers for a weekend of fun educational and social activities, followed by a day of lobbying on Capitol Hill on issues important to the dysautonomia community.  The organization raises funds for research on autonomic disorders, assists with patient recruitment for research studies, provides the patient perspective in study design, and fosters communications and information sharing between researchers and clinicians who are interested in autonomic disorders. Dysautonomia International also offers free educational seminars on POTS to medical schools, nursing schools, hospitals and other medical professionals.

Vanderbilt's own Dr. Satish Raj serves as an active member of the Dysautonomia International Medical Advisory Board, along with other experts in the field.

Contact Information:

Web: www.dysautonomiainternational.org

Facebook: www.facebook.com/dysautonomiainternational

Twitter: @Dysautonomia

E-mail: info@dysautonomiainternational.org

 

dinetThe 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. 

www.dinet.org

 

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

www.OIresource.org

 

 

Syncope Trust and Reflex Anoxia 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
 
* 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.

www.stars.org.uk/

 

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. 

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.
 

Contacts:
Phone: (651) 267-0525
Fax: (651) 267-0524
Email:
ndrf@ndrf.org
www.ndrf.org

 

Shy Drager Support Group Listserv

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

 

This page was last updated September 11, 2013 and is maintained by