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 patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support


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© 2022 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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