Rare Disease Day 2020
Myositis is an incurable rare disease lacking FDA approved therapies. It spans many specialties, utilizes many off-label medications and therapies, but it can be a challenge to coordinate and afford all of the necessary services.
Rare Disease Day 2020 is an opportunity for us to work together in the rare disease community to focus on patient-led research initiatives and promote the sharing of research data more freely.
We will be announcing our plans for Rare Disease Day in mid-January 2020.
SAVE THE DATE
Rare Disease Day is Saturday, February 29, 2020, and we hope you will save the date and join us online starting at 3 PM EST.
Event details are coming soon.
We will be updating this page with more details and more ways you can help as we move closer to Rare Disease Day.
Rare Disease Day 2020 starts in . . .
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 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.
THRIVE FOR RARE
As an organization in the rare community, we recognize that by collaborating with others we can do more than acting alone. We have committed to THRIVE to empower others in the rare community. Join us at thriveforrare.org
