Why a Rare Disease Diagnosis Matters Beyond TreatmentRecently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for...
How I Stay Informed on Ehlers-Danlos Syndrome AdvocacyEver since I was diagnosed with the first of my three rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's...reactions3comments
When It’s Not Laziness: Navigating Procrastination and Rare DiseaseDon't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand...reactions1comment
Featured forum What is your go-to item or ritual for finding physical comfort during a flare-up or a hard health day?Whether it’s a specific pillow, a favorite tea, a warm bath, or a cozy blanket, we want to know what brings you...reactions89replies
Featured story It's Just the Way You AreI just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went...reactions3comments
