Register to attend - Introduction to Ra Pharma & the Potential of Zilucoplan for the Treatment of IMNM
Register and join MSU along with Ra Pharma for a live webinar on Wednesday, November 6, 2019, at 7 PM Eastern time, “Introduction to Ra Pharma & the Potential of Zilucoplan for the Treatment of Immune-Mediated Necrotizing Myopathy (IMNM).”
Learn more about the different types of the idiopathic inflammatory myopathies (IIM), generally referred to as myositis, rare systemic autoimmune muscle diseases.
Learn more about patient-centered programs we offer including support, education, financial assistance, clinical trial matching, advocacy and access to research.
Learn about the various free support options we provide, including live video support sessions and online groups, and get the patient and caregiver support you deserve.
Check out educational myositis videos. Both patient- and -expert led sessions will help you better understand your rare disease and learn more about opportunies for patients.
You can make a difference in various ways. Learn more about how you can get involved in helping MSU and promoting awareness and education of myositis today.
Inclusion body myositis
Although we serve all patients and caregiers with myositis, inclusion body myositis is different from the other inflammatory myopathies.
sIBM patients, here are just some opportunies:
Upcoming Video Support Sessions
Mark your calendar to join for the following sessions. Registration is not available for video support sessions. Join on the date and time listed. View the individual events for full details and join links.
Myositis Patient Video Support Session, October 19th, 2019
October 19 @ 2:00 pm - 3:30 pm EDTsIBM Patient Video Support Session, October 2019
October 25 @ 5:00 pm - 6:30 pm EDTMyositis Patient Video Support Session, November 7, 2019
November 7 @ 7:00 pm - 8:30 pm ESTMyositis Patient Video Support Session, November 16th, 2019
November 16 @ 2:00 pm - 3:30 pm ESTsIBM Patient Video Support Session, November 2019
November 29 @ 5:00 pm - 6:30 pm EST
Share your #MyositisLIFE experiences
Share your experiences with myositis on our new patient and caregiver website, #MyositisLIFE. Share your topic-based experience as a story, photo, short video, or meme.
The realities of living with myositis – It affects more than muscles and skin, and for some the heart and lungs. It affects how we see ourselves; our self-esteem and body image. It tricks us, using guilt, into feeling we are a “burden” on others in our life. Don’t miss the full article by Kelly Dennis, “Unexpected lessons learned while facing my new reality.”
Myositis Caregivers
We love and appreciate our myositis caregivers and care partners.
We have put together tips and resources we believe will help you as a member of your loved one’s healthcare team.
Myositis News and Updates
The Food and Drug Administration (FDA) regulates stem cell products in the U.S. and recently issued a warning about stem cell therapies that are illegal and even harmful.
We are excited to announce our partnership with Ra Pharma for RA101495-02.202: A Phase 2 Study of Zilucoplan in Patients with Immune-Mediated Necrotizing Myopathy. Find out our more and how you can participate.
Watch the video, “Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)” with Helene Alexanderson, Ph.D. with information about how to adapt physical activity and exercise in relation to pain and fatigue.
In this video, Patrick Schmidt of FFF Enterprises and Michelle Vogel of CSI Pharmacy join MSU to explain the IG shortage. More importantly, if you are a patient affected by the shortage, this video provides the information you need to self-advocate and get your IG therapy.
Financial Assistance Program
We know firsthand myositis affects every aspect of a persons life.
We are here to help.
Clinical Trial Matching
We have partnered with Antidote Technologies to make clinical trial matching faster, more refined through the search tool, and by providing you will all of the information you need to make a decision to participate in a clinical trial. And, the trial information is easy to read, adding a huge benefit.
