Patient 2 Patient Support & Understanding
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Live into It
Valued MSA Resources
There are some amazing groups that are leading the way to support MSA patients, their caregivers, and the medical community. These groups were my first contact point for factual information beyond what my doctor provided me. They have opened the doors to finding so many questions.
And here is an interesting fact about them: their staffs are minimal. These are not groups with hundreds of thousands of dollars in budgets. Yet they provide us with resources as if they were the size of the American Cancer Society! I am truly grateful to have come across their websites and I hope you will be too if you are not already using them.
On-line MSA Dedicated Resources
Dedicated to support, education, research, and advocacy.
https://www.multiplesystematrophy.org/about-msa/
Located in McLean, Virginia, USA
Support Hotline 866.737.4999
Supporting patients and research in the UK and Republic of Ireland
https://www.msatrust.org.uk/
Located in London, UK
Contact 033.323.4591
Support, foster research, increase public awareness (with a very handy glossary!)
https://defeatmsa.org
Located Saint Clair Shores, Michigan USA
Contact: 855.542.5672
GARD: Genetic and Rare Diseases Information Center
Not a community support resource, rather GARD is a clearinghouse of rare disease information based on extensive research database.
https://rarediseases.info.nih.gov/diseases/7079/multiple-system-atrophy
Located in Gaithersburg, MD, USA