Celebrating Rare Disease Month: Bet You’ve Never Heard of CHARGE Syndrome!
Most people haven’t heard of CHARGE Syndrome (including doctors who say, "This is my first patient with CHARGE")— and that’s part of the challenge. CHARGE syndrome is a rare genetic condition , affecting roughly 1 in 10,000 births . It’s complex, lifelong, and looks different for every person who has it. The name CHARGE comes from a pattern of medical features that can include differences in the heart, hearing, vision, breathing, growth, balance, and development . Because CHARGE is so rare, finding knowledgeable medical support can be incredibly hard — especially for families living in rural or remote areas . Many parents spend years educating doctors, coordinating dozens of specialists, and traveling long distances just to access basic care. Finding trained caregivers, therapists, or educators who truly understand CHARGE can feel nearly impossible. And CHARGE doesn’t end with childhood. Across a lifetime, individuals with CHARGE may face: Multiple surgeries and ong...