Decoding Darier’s was founded by Genevieve Lee, who has been living with Darier Disease, a rare genetic skin condition, for most of her life. For years, Genevieve felt the weight of isolation that often comes with having a rare condition. She realized that while each person’s experience with Darier’s is unique, the struggles, resilience, and need for understanding are shared.
Determined to change the narrative, Genevieve created Decoding Darier’s as a space where people could come together, share their journeys, and feel seen. What began as her personal mission to raise awareness quickly grew into a supportive global community, one that not only uplifts individuals and families but also connects with researchers and advocates working toward better treatments.
Today, Genevieve’s story continues to inspire others to speak openly about their experiences, build connections, and stand proudly in the face of Darier’s. Through her leadership, Decoding Darier’s has become more than just a community, it’s a movement of hope, education, and empowerment
We believe no one should face Darier’s Disease alone. Connection creates strength.
Every experience matters. By opening up, we empower ourselves and each other.
We lead with empathy, creating a safe space where everyone feels seen and valued.
Together, we build bridges between patients, families, and researchers.
Awareness grows when we speak up, share openly, and stand together.
By supporting one another, we spark hope for brighter days and a stronger future.
Patient advocate
Patient advocate
Patient advocate
Patient advocate
