About Rare Disease Day
For the fourth year in a row, Myositis Support and Understanding Association, Inc. (MSU) is proud to join NORD as a participant in Rare Disease Day (RDD), a day to help make the voices of patients of rare diseases heard because we can feel our needs silenced by the rarity of our diseases. MSU works every day to give patients with myositis a voice.
2017 Theme: Research brings hope to people living with a rare disease
We have provided a few ways below that you can help right now! We will be updating this page soon with Rare Disease Day 2017 information and activities! Check back and join our email newsletter to learn more.
Rare Disease Day 2017
We recently collaborated with Idera Pharmaceuticals to help spread awareness and understanding about their Phase II Pioneer clinical trial for investigational drug IMO-8400 for adult dermatomyositis patients.
Rare Disease Day Video Chat with Idera
As part of Rare Disease Day 2017 and our collaboration with Idera Pharm, we invited Dr. Joanna Horabin to join us for a video chat session to learn more about the currently recruiting, Pioneer clinical trial for adults with dermatomyositis, IMO-8400. To help others learn more about this amazing trial, we recorded it so you can find more information. This trial is active in 17 U.S. locations and 5 outside of the U.S. Idera has made it very easy to be a part of this trial with benefits rarely seen in clinical trials today.
Important ways you can help
What you can do now to help
There are many things you can do to help spread awareness of rare diseases such as myositis. One of the easiest ways is to get involved with Handprints Across America by changing your profile picture on Facebook and Twitter to include a Twibbon which adds a frame and message to your profile image. (We have included an example here.)
Then, once your image is created, submit it to be featured on the Rare Disease Day website and social media sites.
This helps to show your support for Rare Disease Day 2017.
Make a Donation to MSU
Making a donation of any amount is fundamental in helping any nonprofit succeed.
MSU is an all volunteer-managed nonprofit so nearly 100% of your donation goes directly to developing and funding new programs and services and ensuring that we have funds available to award to those needing financial assistance.
Living with a rare disease can cause financial ruin and that is why we are here to help. Will you help today by making a donation of any amount? Even $10 helps tremendously.
You can also make your donation in memory or in honor of someone.
Share your story of living with a Rare Disease
How has having a rare disease impacted your life?
Write your story about how having a rare disease has affected you or someone you know. We learn through the experiences of others.
Your story will be shared on our website, and we suggest you also submit it to the Rare Disease Day site. We can, and will, make a difference!
Share your photo with the RDD Sign
A part of Rare Disease Day is showing our support for those living with a rare disease. All forms of Myositis, otherwise known as Inflammatory Myopathies, are rare diseases with fewer than 200,000 patients in the U.S.
So, download the sign below, take a picture with it, and then upload it to us to be posted on our website and social networking sites. It’s fun and effective!
Other ways for you to help MSU and Rare Disease Day 2017
Attend our Rare Disease Day Video Chat
Join MSU and Idera Pharmaceuticals for a video chat on Rare Disease Day to learn more about their Pioneer clinical trial. And, you will have the ability to ask questions at the end. 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. See above.
Search the Rare Disease website for events near you
Search for RDD 2017 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.
