Rare Disease Day 2019
Rare Disease Day 2019 theme announced: Bridging health and social care
Myositis is a rare disease that spans many specialties, utilizes many off-label medications and therapies, but can be a challenge to coordinate all of the necessary services. Rare Disease Day 2019 is an opportunity for us to work together to better bridge the health and social aspects of life with a rare disease.
Rare Disease Day and World Rare Disease Day are both February 28th, 2019
See ways to get involved below.
Rare Disease Week on Capitol Hill
On the Road with MSU
MSU is on the road for the first time this year to attend Rare Disease Week on Capitol Hill February 24th- February 28th hosted by Rare Disease Legislative Advocates (RDLA). This is part of our commitment to you to reach out and join other advocacy groups to help influence our legislature and “empower the myositis community.”
Rare Disease Day "Share" Campaigns
Below are some Hashtag Board and Poster images to help #ShowYourRare. Download, print, fill in the blank – write large with a thick, dark-color marker – and take a photo with it!
Get creative and invite others to join in. Share with the organization hosting the event and with us to be shared publicly. Don’t forget hashtags for myositis including #MyositisLIFE!
To download and save the sign, right-click the image below and choose “Save As” or “Save image as” or click the buttons to download.
#ShowYourStripes Campaign
NORD: Wear stripes on Rare Disease Day to show solidarity in rare disease awareness and education, and share in this important message.
- Share photos, stories and videos of you and your colleagues, friends and families all wearing your stripes together on social media using the hashtags #Showyourstripes and #Rarediseaseday.
- Share on Facebook, Instagram, Twitter, and other networks with a meaningful caption.
- Upload your photos here for us to share!
- Use this Show Your Stripes social media profile frame, as well as stickers, signage and other materials that can be downloaded and printed.
See full information using the buttons below.
#ShowYourRare for Rare Disease Day
Rare Disease Day: #ShowYourRare Campaign
- Check out many ways to be creative and Show Your Rare.
- Paint Your Face with brightly colored face paints.
- Share your photo on social media with the hashtag board.
- Post with these hashtags, plus your own: #RareDiseaseDay, #ShowYourStripes, #Myositis, #MyositisLIFE.
- Share with us, too!
#CareAboutRare Campaign
Global Genes – Get involved, 2019 World Rare Disease Day!
- Share photos, stories and videos of you, your friends and families.
- Download and print the sign.
- Fill in why you #careaboutrare and take a “selfie-style” photo.
- Share the photo on Facebook, Instagram, Twitter, and other sites, to raise rare disease awareness.
- Post with these hashtags, plus your own: #CareAboutRare, #WRDD2019, #Myositis, #MyositisLIFE.
- Don’t forget to upload your photos to share with us.
Upcoming Events
Clinical Trials 101
This session was recorded and you can find the recording above.
Clinical Trials 101: Understanding how clinical trials work to find the right fit for you. This session is in partnership with Antidote Technologies. Live session held via Zoom at 3 PM EST on February 27th.
Introduction to Ra Pharma & the Potential of Zilucoplan for the Treatment of IMNM
November 6 @ 7:00 pm - 8:00 pm EST
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
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
Get Involved: Rare Disease Day 2019
Register to attend our Rare Disease Day Video Session
Join MSU and Antidote Technologies for an interactive, online video session, “Clinical Trials 101.” You will have the ability to ask questions and this will be a recorded event.
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.
Write and Share your rare disease story
We learn from the experiences of others. How has myositis, a rare disease, impacted your life? Write it and share it to be featured on our website and social media sites!
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 2019 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.
