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.
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!