The Power of Multidisciplinary Rare Disease CareI used to hate any doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital resulted from...
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Accessing treatment can be hard for many. Many rare disease drugs are expensive. Some are...reactionscomments
Patient Advocacy: Tips for Communicating with Your DoctorI once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider warned that being a "squeaky...reactionscomments
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
