Multiple System Atrophy Resources
The Multiple System Atrophy Coalition is committed to providing outstanding, up-to-date resources for those affected by MSA. Whether you are a patient, caregiver, family member, friend, treating physician, or therapist, you deserve access to the best available information, both on this website ad other trusted sites.
Below is a list of websites where you can find additional information about multiple system atrophy, related conditions, and information important to those with rare diseases:
MSA Patient Registry
Global Multiple System Atrophy Registry (GLOMSAR) – For current MSA patients in all countries. It is very important to register! The two objectives of the GLOMSAR are:
- To assemble speedily a sizeable cohort of MSA patients for clinical trials (it is very difficult to identify enough patients with a rare disease for any research trial if they are not registered with a site that can dynamically identify patients meeting the research trial requirements).
- To carry on a longitudinal prospective study, used to define variability and regional differences in the first global observational study (the GLOMSAR is a GLObal registry and the responses asked for in the registration process provide the necessary data to identify a diverse patient cohort for research studies).
Books on MSA and Related Topics:
Download the PDF of Dr. David Goldstein’s book – Principles of Autonomic Medicine v. 2.1 11-28-16
Past MSA Coalition Conferences on YouTube:
Online Multiple System Atrophy Support Groups/Networks:
Multiple System Atrophy Yahoo Group: This online discussion group first established in 1995 by Vanderbilt University Autonomic Dysfunction Center offers support to the global Multiple System Atrophy community. 2000 members.
Regional MSA Coalition Facebook Pages:
These regional groups were set up so that people who live in the US can connect more easily with others from their geographic region and in so doing, join their voices for Multiple System Atrophy awareness and support.
- New England states USA (ME-NH-VT-CT-RI-MA)
- Middle Atlantic states USA (NY-NJ-PA)
- Northeast Central states USA (IN-IL-MI-WI-OH)
- Northwest Central states (IA-KS-MN-MO-ND-SD-NE)
- South Atlantic states USA (DE-DC-FL-GA-MD-NC-SC-VA-WV)
- Southeast Central states USA(AL-KY-MS-TN)
- Southwest Central states USA (TX-OK-LA-AR)
- Mountain states USA (AZ-CO-ID-NM-MT-UT-NV-WY)
- Pacific states USA (CA-OR-WA-HI-AK)
Multiple System Atrophy Support Groups and Charities:
- List of Local MSA Support Groups
- MSA Awareness
- Defeat MSA: Joseph G. Fortier Foundation
- MSA NJ
- Multiple System Atrophy Trust
- MSA Shoe
Dysautonomia and Other Related Conditions:
Brain Donation Information:
Multiple System Atrophy Clinical Trial Finders: