Rare Artist

Rare Artist is honored to be featured by the Rare Genomics Institute!

"Rare Artist is an advocacy opportunity that allows people to share their rare disease journey through art—from the diagnostic odyssey to barriers in accessing care—and to center the human experience behind the diagnosis." — Stephanie Riordan, Senior Director of Patient Programs, EveryLife Foundation for Rare Diseases

Learn how Rare Artist helps individuals affected by rare disease share their stories, raise awareness, and advocate through creativity: https://www.raregenomics.org/news-events-blogs/inside-everylife-foundations-rare-artist-program

🎨 Rare Artist 2026, powered by EveryLife Foundation for Rare Diseases, is now open through July 20. Share your story. Advocate through art. Enter at RareArtist.org

We are so proud of our 2025 Rare Artists, Alex Yiu, who is featured in the documentary UNDIAGNOSED, now streaming: https://undiagnosedfilm.com/streaming. The film highlights both the cutting-edge science and the very real human impact of undiagnosed illnesses on families around the world.

Alex created his song “Tennessee” using an Eye Gaze machine as both an instrument and a tool to help write lyrics. Due to disease progression, Alex is unable to speak or walk independently, and music has become a powerful way for him to share his story. “Tennessee” reflects a place he dreams of visiting freely, without the limitations of his disease.

Over the past year, Alex has spent extended time in the hospital, and Rare Artist became a source of motivation, creativity, and connection during some of his hardest days. His nurses even rallied around him during public voting last year!

Learn more about Alex's journey at https://everylifefoundation.org/portfolio-item/tennessee/.

Join us in celebrating Alex and the power of storytelling through art. If you’d like to leave words of encouragement for him, drop them in the comments below 💛