Rare Disease Day 2020
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
IBM Patient Video Support session
Register to join the MSU Inclusion body myositis real-time video support session, the last Friday of...
January 29 @ 5:00 pm - 6:30 pm EST|Recurring Event (See all)An event every month that begins at 5:00 pm on day Last of the month, repeating until January 28, 2022
One event on December 18, 2020 at 5:00 pm
Monthly Necrotizing Myopathy Patient Video Support session
Register to join the Immune-mediated necrotizing myopathy video support session, the last Saturday o...
January 30 @ 3:00 pm - 4:30 pm EST|Recurring Event (See all)An event every month that begins at 3:00 pm on day Last of the month, repeating until December 25, 2021
One event on December 26, 2021 at 3:00 pm

Create an online myositis fundraiser
Facebook fundraisers are a great way to raise money for patient-centered nonprofits like MSU. They are easy to setup and share, and Facebook covers all fees.
If Facebook isn’t for you, create a fundraising page with MSU directly using the Give Lively platform. Invite friends to join your team, set a goal, and share often. Get started below.
Would you like to make a donation?
Any amount you can donate is helpful, no matter if it’s $5 or $2500. Your donation goes further in helping myositis patients and caregivers since MSU is an all-volunteer nonprofit organization. We appreciate your generous support.
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.