Share your story of living with a Rare Disease

We want to read your story about living with or caring for someone with Myositis. Sharing your story will not only help advance awareness of Myositis, it will also help others understand how this rare disease affects each of us differently.

Simply use the form below to submit your story and photo to us. Once approved, we will add it to our website and share with our social networks. By submitting your story and photo to us, you are giving us permission to share these publicly.

Since your story will be published publicly, we ask that you choose how you would like your name to appear. Under “display name,” please enter your name exactly as you want it to appear. You can use your full name, initials, a variation of the two or type ‘none’ and we will use anonymous as the author name.  Get started below!

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Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register

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