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[BRIEFING] Rare Storytellers Unplugged: Voices of Hope for Rare Disease

  • 2045 Rayburn House Office Building (map)

7000 rare diseases.
30 million people affected.

One night filled with stories of hope and resilience.

30 million Americans and their families are affected by a rare disease. And each of them has a story of resilience, survival, and hope. Join Harmony4Hope and Retrophin to hear the first-hand experiences of storyteller Adrienne Provost, whose daughter is living with the rare disease Epidermolysis Bullosa. Learn what policymakers need to know about the unique challenges of living with one of these diseases, and the steps you can take to make your voice – and your story – heard.

We are also pleased to welcome Rare Disease Advocate and musician Trapper Schoepp to Capitol Hill, to bring what NPR Music calls, “Rootsy, cinematic rock that charms as it soars.”

This event was organized to conform with House Ethics Rules for widely attended events.