How to Get a Diagnosis for a Rare DiseaseGetting a new rare disease diagnosis can be a long and difficult journey. Some conditions, such as narcolepsy, are so misunderstood that...
One Essential Strategy Every Rare Disease Caregiver NeedsI’ve shared before about taking on a new role: not only am I a rare disease patient, but I am now also...reactionscomments
Finding a Job That Fits Your Health NeedsWork can be hard when you have a rare chronic disease, such as paroxysmal nocturnal hemoglobinuria (PNH). Companies generally do not offer...
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...reactions93replies
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
