You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**IMPORTANT**

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

SDS/MSA Support Group

a/k/a: SDSSG

Address

8311 Brier Creek Parkway Suite 105-434
Raleigh, NC 27617

800 Number

866-737-4999

Email Address

Vjames@shy-drager.org or jbiedenharn@shy-drager.org

Website

http://www.shy-drager.org

The mission of the SDS/MSA Support Group is to gather information from each group of people involved (patients, caregivers, family members, and physicians) and disseminate that information to all. The SDS/MSA Support Group is an information center and a "helping hand" for affected people. Through various programs, including regional patient/caregiver support group meetings, support of local groups, a toll free help line and a Web site, the SDS/MSA Support Group can reach many more people in need. The support group also works closely with physicians who are newly involved with the disease as well as those who are involved in the essential research to discover a cause, modes of treatment, and, hopefully, a cure. Information about the disease is provided on the group's Web site and through educational meetings. By sharing information, resources, and support, the SDS/MSA Support Group hopes to create a "circle of hope" for those affected by SDS/MSA. On the West Coast, those seeking MSA support may call Vera James, a member of the group, at 1-866-737-5999.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.