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.
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.
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!
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.
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.
- November 6 @ 7:00 pm - 8:00 pm EST
- October 19 @ 2:00 pm - 3:30 pm EDT
- October 25 @ 5:00 pm - 6:30 pm EDT
- November 7 @ 7:00 pm - 8:30 pm EST
- November 16 @ 2:00 pm - 3:30 pm EST
- 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