News & Events

When Medicine Attacks Motherhood

mom comforting child

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 »

Why Complex Medical Families Are Grateful To Justina

By DM Sullivan This week, the long-delayed Justina Pelletier lawsuit goes to court.  Rare disease and complex medical families are watching very closely because since 2013 when Justina was taken into state custody after a disagreement between her parents and doctors at Boston Children’s Hospital, things have seemed to get worse not better. Rare disease… Continue Reading »