2/13/2024 A Rare FriendshipMy friend Liz lives ten miles north of me. The journey between our homes can…
A Lifelong Train RideHaving a child with a rare progressive disease is like a lifelong train ride... Every…
What Survivor’s Guilt Looks Like in Rare DiseaseIn 2015, Courageous Mom, Melissa Hogan published a blog with The Mighty exploring her son…
By Parents For Parents - Why We Do This & What We LoveFrom the beginning, Courageous Parents Network has been BY Parents, FOR Parents caring for seriously…
No Man’s LandFinding my way through anticipatory grief and anticipatory bereavement I left the hospital that…
Three ingredients for the best Care Formula everEach child is an individual and every family has its own particular patterns, needs, ways…
