Having a Rare Disease is a Full-Time Job
Written By Sara Mazzilli
Does managing your rare disease feel, as Rare Human Lindsay describes it, like an unwelcome full-time job?
Lindsay was diagnosed with dermatomyositis a couple of years ago. Since then, she has undergone more than 350 doctor appointments, 250+ hours of infusions, 10+ ER visits, while juggling insurance approvals, rides, and her pain and fatigue.
Navigating rare disease care can be exceptionally complex. If you are interested in learning more about the latest research opportunities in your rare disease, you can contact the Know Rare Support Team at support@knowrare.com.
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