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...reactions87replies
How Do You Cope?Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...reactions60repliesCoping
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions161repliesCoping
From Silence to Service: Practicing Rare Disease AdvocacyI didn’t set out to become an advocate. I set out to just survive. Living with a rare disease means learning to...reactions1comment