News & Events

By. DM Sullivan My phone has been blowing up all week. It happens every May. This year it seems to be a little more intense, but I know the reason – Mother’s Day. I am a rare disease mom and patient advocate. I have spent the last ten years supporting families who live with rare,… Continue Reading »

By DM Sullivan  2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses. It felt like a celebrity endorsement of sorts. EDS suddenly went from “what?” to the “disease du jour” and was all over social media and pop culture news programs like Entertainment… Continue Reading »