At HeartBridge Collective (HBC) , we support patients and caregivers alike — because rare disease is never a solo journey. It affects the whole household, the whole family, and often the same two people day after day. When a rare disease is discussed, the focus is usually on the patient. But standing right beside them is a caregiver whose physical, emotional, and mental health are also on the line. Research now confirms what families have been saying for years: the emotiona
4 days ago3 min read
"If no one else was telling their story, then maybe I needed to tell mine. And maybe, just maybe, that would give others permission to share theirs too."
