Myositis Support and Understanding, Patient-Centered Nonprofit

Myositis Support and Understanding (MSU)

A patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community!

Founded by myositis patients for myositis patients and care partners, MSU is a leading support provider and network for myositis patients, their caregivers, family members, and friends.

We are empowering the myositis community through education, patient advocacy, awareness, clinical trial matching, access to research, and need-based financial assistance for patients.

We are helping lead the effort to find effective, affordable, and safe therapies for all forms of the idiopathic inflammatory myopathies, myositis. And, while research is extremely important, at MSU we know managing day-to-day life with myositis is difficult and is the reason we provide patient-centered programs.

Collaborating with like-minded organizations, and continuing to build relationships with researchers, other nonprofit and patient advocacy organizations, and the pharmaceutical industry, in a transparent and straightforward approach will continue to be a top priority. Together we can do great things for the myositis community.

MSU ProgramsFinancial AssistanceGet Support
Myositis Pain and Opioids survey update

Myositis Pain and Opioids Survey Update

Pilot survey ended June 4, 2019

We wanted to share a little bit of news. We aren’t able to give many specifics yet, because it’s still in the conceptual stage, but thanks to our pilot survey with close to 500 responses, MSU is teaming up with several known myositis researchers to conduct a more formal study about myositis pain and the effects of the 2016 CDC regulations on opioids. We will let you know more as it becomes available, but for now, we want to thank YOU!

If you didn’t get to take the initial survey, don’t worry. You will have the opportunity to have your voice heard on this topic soon. Be sure to register for your free MSU membership at UnderstandingMyositis.org/register to stay updated via email and to continue getting involved to make a difference.

We couldn’t do anything we do without your participation, support, attention, and of course, your donations and sharing our fundraising efforts! You are the reason why our nonprofit organization was founded; by patients for patients. You matter!

Read ``The Pain Med Taper Debacle``

Upcoming Myositis Support Sessions

Live Video Support for myositis patients and caregivers

Exercise as a treatment for Myositis

A video education session by Helene Alexanderson, associate professor, PhD, physical therapist at the Karolinska University Hospital and Karolinska Institutet in Stockholm Sweden.

Featured Myositis News

Skin findings seen with myositis autoantibodies and treatment of skin in dermatomyositis

Dr. Victoria Werth joined us live online for a video education session titled, “Skin findings seen with myositis autoantibodies and treatment of skin in dermatomyositis.”

PSG+MSU+You: Your Role in the World of Diagnostics

Plasma Services Group (PSG) joined us for a live video discussion about donating plasma for medical research. You could earn up to $200 per donation of plasma. This is used for medical research and in the making of diagnostic test kits.

Education and Support are key

We have hosted several myositis experts to lead live, online video sessions. All sessions were hosted online with live participation. These sessions were recorded and we hope you will take advantage of the educational opportunities these provide for you and your family members.

Find the videos on our YouTube page and share with your loved ones.

Myositis Support Community in partnership with Inspire

Join the Myositis Support Community

For myositis patients and caregivers

If you are living with one of the idiopathic inflammatory myopathies (myositis) or you are a care partner, family member, or friend of someone who is, we invite you to join the Myositis Support Community to connect, collaborate, share stories and discuss questions and concerns, as well as to feel empowered.

Living with a rare muscle disease is hard enough. Why not get support?

Read the full announcement and learn more about MSU programs.

Join the Myositis Support Community

Register for your free MSU Membership

Join us as a member and you will receive email updates that include myositis research, MSU updates and news, events, fundraising, advocacy items, and much more. Membership is always free!

Register Login

MSU and Myositis: Take Action

Myositis Programs and Services

Check out the Myositis patient-centered programs and services we currently offer including education, financial assistance, and support. We are developing new programs to help myositis patients and caregivers.

See Programs we offer

Support that makes sense

We bring support directly to you! It can be tough to get out with this often-debilitating disease. Patients and Caregivers, join our newly launched 24/7 Myositis Support Community!

See support options

#MyositisLIFE New Site

We learn from the experiences of other myositis patients and caregivers. Read and watch patient and caregiver submitted stories, short videos, images, and memes, and submit yours.

Visit #MyositisLIFE

Clinical Trial Matching

Easier way to view and locate myositis clinical trials. We have partnered with Antidote! Easy-to-read clinical trial information and contacts. Patients are needed for important studies.

Clinical Trial Matching

Get Involved

We are in this together! So, why not get involved? We have many opportunities available for volunteers, support group administrators, and board members.

Get Involved Today!

Myositis Resources

We take extra time to find, highlight, and create resources for those living with and caring for someone with myositis. Find your myositis resources and downloads, and share them with friends.

Get Myositis Resources

2019 MSU Sponsors

Corbus Pharma
Orphazyme
CSI Pharmacy
Diplomat Specialty Infusion

  Empowering 







Register for your FREE MSU Membership

Get involved and stay updated by registering for your membership.
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