Join MSU in celebrating Rare Disease Day, Feb. 28th, and Rare Disease Week on Capitol Hill. We are also...
Tag Archive for: rare disease
February 28th is Rare Disease Day! See how you can get involved!
We all face a tough battle living with rare, autoimmune diseases like myositis. Remember to Be Kind as we never know what one is dealing with on a particular day.
This article really struck at the heart of what many of us living with myositis face. We suggest reading and sharing this article.
“Be Kind”
By Rebecca Zook
“The rare disease-diagnosis road is not for the fainthearted. Anyone who has traveled it or lives with any kind of chronic illness is far stronger than you can imagine. We call ourselves zebra-warriors. In reality, we aren’t braver than anyone else; we are fighting because we have no choice. We are fighting an endless, unwinnable battle because the alternative is unthinkable. We have no cure and no end point. We walk side by side with our diagnoses and have to make peace with them.”
Read the full article at http://www.igliving.com/BlogEngine/post/be-kind.aspx
It has been a busy and productive year for MSU. We are sorry so many are still suffering from...
Learn more about Rose's experience on Capitol Hill during Rare Disease Week 2017. Find helpful links to Advocacy organizations...
You are rare! Yes, you, living with Polymyositis, Dermatomyositis, Inclusion Body Myositis, and Juvenile Myositis. Our caregivers, you, too,...
Are we the Orphans of the Healthcare System? As a patient living with a rare disease you may come...
It was an exciting day in the State of Delaware Tuesday, September 2nd. I had the honor to meet...
Join MSU in celebrating Rare Disease Day 2015 Myositis Support and Understanding (MSU) has the honor of joining The...
Care partners, share your rare disease story In observance of the upcoming Rare Disease Day 2015 theme, “Living with...
Helpful Resources
Upcoming Events
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Clinical Trials 101
February 27 @ 3:00 pm - 4:00 pm EST -
Myositis Patient Video Support Session, March 6, 2019
March 6 @ 7:00 pm - 8:30 pm EST