Alive with Rare

  • Your Story Matters: Why Sharing Your Rare Disease Journey Changes Everything

    Write a sentence.Share a moment.Begin the conversation. Your voice matters.Your story matters.And someone out there is waiting to hear it. “In the rare disease community, stories aren’t just reflections—they’re bridges. They connect us across diagnoses, distances, and silence.“ When I first began sharing my rare disease journey eight years ago as an advocate with the…

  • From Silence to Service: The Practice of Rare Disease Advocacy

    Living with a rare disease means learning to navigate uncertainty, isolation, and a constantly shifting definition of what “normal” looks like. For years I held my story close, unsure whether it mattered—or whether sharing it would help anyone else. Then one day, someone reached out and simply said, “Me too.” In that moment, I learned…

  • What I Wish My Doctors Knew — A Letter From the Rare Disease Community

    There are things I wish every doctor understood about living with a rare disease—not because they lack skill, dedication, or compassion, but because the lived experience of chronic and rare illness is something no medical training can fully capture. When I walk into an exam room, I’m not just bringing symptoms, lab values, or imaging…