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Rare Disease Day 2020

Rare Disease Day – February 29, 2020. It’s never too late to get involved.

Myositis, the general term used to refer to the idiopathic inflammatory myopathies, is a group of rare, incurable autoimmune diseases that lack FDA approved therapies. Myositis spans many specialties and utilizes various off-label medications and therapies, but it is often challenging to coordinate and afford the necessary care and services patients require.

Like with other rare diseases, myositis patients and caregivers need an organization that caters directly to their needs. MSU, founded by myositis patients in 2015, was created to fulfill a need for more patient-centered programs and services and plays an essential role in the myositis community by offering a “Simply Put” education series, various support options, empowering patient opportunities, financial assistance, and access to research, clinical trials, and resources.

Rare Disease Day is an opportunity for us to work together in the rare disease community to focus on patient-led research initiatives and expanding educational support for patients and caregivers.

Rare Disease Day video sessions

Our Rare Disease Day, and Week, video sessions will be available towards the end of the first week of March. If you are a registered member of MSU, you will receive an email with the video when it is published. We thank all who attended live and we thank our guest speakers and sponsors, Plasma Sevices Group and Kezar Life Sciences.

Upcoming video support sessions

Leave a review of MSU

Prepare and Get Involved: Rare Disease Day 2020

  • Create a video about your life with rare disease and share

    Nothing speaks more volume than a video sharing your life or message of living with the rare disease, Myositis. Upload it to YouTube and share the link with us to post on our sites.

  • Share your rare disease experiences

    We learn from the experiences of others. How has myositis, a rare disease, impacted your life? Write and share your experiences through our new #MyositisLIFE site. We will also feature your stories on our comprehensive myositis and MSU site.

  • Host a Rare Disease House Party

    Invite your friends and family members to a house party. You can order and share brochures, wristbands, pens, and info cards to help educate them. And, during the house party, have a fundraising contest for MSU.

  • Change Social Networking profile and cover photos

    Show your support of Rare Disease Day by changing your social networking profile and cover photos. Find photos to use at RareDiseaseDay.org 

  • Search the Rare Disease website for events near you

    Search for RDD 2020 events in your area and attend, taking myositis information cards and brochures to help promote awareness of our rare disease.

    You can order MSU myositis pens and wristbands to hand out as well! Visit our Shop page.

  • Contact the media, write a letter to the editor

    Contact your local newspapers, radio stations, and television stations to do a segment about Rare Disease Day and Myositis. You can contact us for help with wording.

© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

The best way to prevent catching or spreading coronavirus is thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

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