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Patient Advocacy Groups

MSA CoalitionThe Multiple System Atrophy Coalition is a positive beacon of hope for patients suffering from a rare, insidious disorder called Multiple System Atrophy (MSA) or Shy-Drage Syndrome (SDS). The MSA Coalition was originally created as the SDS/MSA support group to respond to the needs of persons affected by MSA. 

 The MSA Coalition consists of numerous dedicated volunteers who share the primary purpose of assisting researchers to find a cure for MSA. The coalition also provides well needed patient and caregiver support, educational resources, and advocacy to create awareness and support regarding important ongoing issues in the MSA community.  Presently, 75% of all donations go directly into a dedicated MSA Research Fund, which 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 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 connect face-to-face with others with similar circumstances. The colation also provides a toll-free support line. Patients, caregivers and families can rely on The Multiple System Atrophy Coalition for emotional support and compassion as they face this horrible disease, knowing that this growing organization consisting of thousands of supporters is advocating for recognition, understanding, and a cure for this debilitating disease. 

www.Multiple-System-Atrophy.org

Dysautonomia InternationalDysautonomia International is an all volunteer 501(c)(3) non-profit organization that focuses on dysautonomia Awareness, Advocacy and Advancement of scientific research.  The organization offers information about dysautonomic disorders, useful links to the most recent journal articles, an Autonomic Disorders Video Library, exercise and dietary tips, school and workplace accommodations, downloadable educational materials, and ways to connect with other patients with dysautonomia. The website also contains an Interactive Global Dysautonomia Map that allows patients to find expert doctors 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 regarding issues important to the dysautonomic community.  The organization also raises funds for relevant research, assists with patient recruitment for research studies, provides patient perspective in study designs, and fosters communication and information sharing between researchers and clinicians who are interested in autonomic disorders. In addition, Dysautonomia International offers free educational seminars on POTS to medical schools, nursing schools, hospitals, and medical professionals.

Vanderbilt's own Dr. Satish Raj serves as an active member of the Dysautonomia International Medical Advisory Board, along with other well-known 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 (DIN) helps people with Postural Orthostatic Tachycardia Syndrome, Neurocardiogenic Syncope, Pure Autonomic Failure, and Multiple System Atrophy. DINET provides educational material in the form of a quartely newsletter, support groups, a moderated online forum, an international program that connects both patients and caregivers, and a list of phyisicians worldwide who are experts in the field of dysautonomia.

www.dinet.org

OIThe OI Resource is a patient support website for those with chronic Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia Syndrome (POTS). 

                   www.OIresource.org

STARSSyncope Trust and Reflex Anoxia Seizures is an international charitable organization that offers online information and support, advance the knowledge of the general public and medical professionals, and promote research in the management of Syncope and Reflex Anoxic Seizures. The organization provides information and reports on the various types of syncopes, opportunities to connect with similarly affected individuals and families; information leaflets, literature, and videos; newsletters and monthly e-bulletins; regional, national and international meetings; a free 24-hour helpline, and professional development awareness programs. 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 suffering from a dysautonomic disorder. The NDRF aims to provide educational support, further the advancement of medical and scientific research on the causes and treatments of autonomic disorders, to provide a referral network of physicians and medical facilities specializing in dysautonomica, as well as advocating to raise public awareness of these conditions.

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

Shy Drager Support Group Listserv

In 1995, Dr. David Robertson at the Vanderbilt Autonomic Dysfunction Center created the Shy-Drager Syndrome (SDS) electronic mail list as a means to connect patients with SDS or MSA and their families to other affected patients around the world. The webiste allows patients and family members to share and learn valuable information about this particular dysautonomic illness. The list contains over 900 subscribers and is growing. To subscribe, click on the link below and follow:
 

Shy-Drager Syndrome Electronic ListServer