Join us for Rare Disease Day
Rare Disease Day is held on the last day of February and is even rarer this year. Join MSU this month, and on Rare Disease Day, February 29th, as we host several live online education and support sessions, along with a chance to win giveaways provided by Plasma Services Group (PSG) when you submit interest in our at-home volunteer opportunities.
Rare Disease Day is also a great opportunity to reach out to your family and friends to educate, raise money, and invite them to get involved in the all-volunteer patient-centered work we do every day.
Watch recordings of our myositis expert-led educational videos to learn more about the various types of myositis, and other myositis-related topics.
Join us February 29, 2020 to observe Rare Disease Day! Together the rare disease community is strong and our focus is building partnerships with other organizations.
Upcoming Myositis Video Events
Register to join Orthotics and Myositis video session
February 25 @ 6:00 pm - 7:00 pm ESTsIBM Patient Video Support session, February 2020, 5 PM ET
February 28 @ 5:00 pm - 6:30 pm ESTRare Disease Day $500 Gift Card Giveaway sponsored by Plasma Services Group
February 29 @ 3:00 pm - 4:00 pm ESTRegister to join “An Introduction to the PRESIDIO Clinical Trial of KZR-616 for the Treatment of Polymyositis and Dermatomyositis”
February 29 @ 5:00 pm - 6:00 pm EST
Clinical Trial for IMNM patients
Do you have immune-mediated necrotizing myopathy?
Learn more about the phase 2 clinical trial of Zilucoplan for IMNM from Ra Pharma.
Watch the recorded video session to learn more about the science and the phase 2 clinical trial details, including enrollment and eligibility.
This is the very first clinical trial for IMNN.
Inclusion body myositis
Although we serve all patients and caregivers with myositis, inclusion body myositis is different from the other inflammatory myopathies.
sIBM patients, here are just some opportunies:
Myositis News and Updates
Learn more about how to apply and qualify for Social Security Disability Benefits when living with the inflammatory myopathies, generally referred to as myositis.
Helpful hints (not resolutions!) to start off the new year with a plan to work toward great mental health because when we feel our best, mentally, we are able to foster our best physical well-being, no matter where we are in our myositis journey.
Caregivers make it all possible!
Our myositis caregivers give and give, and they need support, encouragement, and resources to help.
We have put together some tips, articles, videos, and resources we believe will help you as a member of your loved one’s healthcare team.
Check out #MyositisLIFE
Learn more about our newest program with its own dedicated interactive community website, #MyositisLIFE. Designed just for myositis patients and caregivers to share their experiences with myositis, this program helps others to better understand our rare disease and will help to gain interest from the medical and research communities.
Popular Resources
Financial Assistance Program
We know firsthand myositis affects every aspect of a persons life.
We are here to help.
