Global Genes Patient Advocacy Summit Highlights Video 2109
Seth Rothberg, co-founder of Our Odyssey, and Lynn Wilson, VP of Myositis Support and Understanding (MSU), having some fun at the Global Genes Patient Advocacy...
Advocacy
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MSU participates as sponsor of the 2019 TMA Annual Patient Conference
Check out some photos we captured participating as a sponsor of the 2019 TMA conference. Find information about our sponsors and partners that also attended....
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The pain med taper debacle
The opioid crisis is real and should be addressed, but there is no excuse for the damage it has done to people with incurable pain....
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Treat my symptoms, please…but don’t patronize me
Our symptoms and histories aren’t two second sound bites. We have complicated health histories and they matter, both for us to be heard and also...
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Advocating for Yourself in the Midst of Insurance Prescription Denials
We explain and highlight a personal account of how one patient fought the insurance company trying to deny a medication for myositis.
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An Open Letter: Dear Dermatomyositis
In January 2015 I was diagnosed with Dermatomyositis at the age of 36. Of course, I never heard of it. My initial reaction was mixed...
