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...
How to Start Your Own Advocacy GroupAdvocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...reactions1comment
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
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
