Young adults living with rare diseases have many unmet needs and many life decisions that can be impacted by...
Meet two people with myositis who are living their lives with purpose and positivity. Holly Jones and Rhonda Rogers...
Partner Spotlight: How Myositis Support and Understanding Association adapts and stays nimble
Charlene Fernandez of RDMD put MSU in the spotlight for Myositis Awareness Month, May 2020. Read the article to learn about MSU and two of the board members who also manage daily operations, and who are also living with myositis themselves.
Read the full article at https://www.rdmd.com/blog/partner-spotlight-myositis-supportand-understanding-association
Learn more about the RDMD and MSU partnership.
Join MSU in celebrating Rare Disease Day, Feb. 28th, and Rare Disease Week on Capitol Hill. We are also...
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,...
Simply stated, an “orphan disease,” sometimes called a “rare disease,” describes one of more of 7,000 diseases affecting relatively...
It was an exciting day in the State of Delaware Tuesday, September 2nd. I had the honor to meet...
Get Support!
Upcoming Events
Sat
30
Monthly Necrotizing Myopathy Patient Video Support session
January 30 @ 3:00 pm - 4:30 pm EST
