Rare Disease Day

Care partners, share your rare disease story

In observance of the upcoming Rare Disease Day 2015 theme, “Living with a Rare Disease,” we want to know what it’s like for you, as a care partner, to deal with the various complexities surrounding a rare disease diagnosis.

Often with rare diseases, we find the need to search outside of our usual healthcare providers to find physicians more experienced with our particular disorder. This journey can lead to delays in diagnosis and treatment and frustration about starting over, not to mention the medical bills and travel expenses that may start to pile up.

And to add to the frustrations, family members and friends may question whether the illness actually exists when doctors are unable to figure out what is wrong.

Hopefully, a point of relief emerges when we find the diagnosis we have been seeking and begin treatments that are often not developed for our disease, but rather hand-me-downs or orphan drugs that we hope will work by itself or in some combination through trial-and-error.

Does this sound familiar? We want to hear what it’s like for you as a care partner, spouse, family member or friend, of someone with Myositis or currently undergoing the diagnostic process. Share your story to help others understand. Through sharing common experiences, others can learn and maybe skip a few steps we wish we could have.

The slogan for Rare Disease Day 2015 is “Day-by-day; Hand-in-hand.” Let’s take each other’s hands and help guide others through the process. Use the link below to share your story!




Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization with a mission to improve the day-to-day lives of Myositis patients. MSU is a patient-centered organization, founded by Myositis patients, for Myositis patients, and believes education, support, advocacy, and assistance are key to helping patients and caregivers. As a nonprofit, we rely on donations for funding and volunteers to help manage our fast growing organization.

View more information: Myositis Support


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