Decoding Darier's – Decoding Darier's

Decoding Darier’s, together

Patient‑led help for Darier’s Disease. Providing Clear resources, safe spaces, community building.

Decoding Darier’s, together

Patient‑led help for Darier’s Disease. Providing Clear resources, safe spaces, community building.

Our Mission

At Decoding Darier’s, our mission is to empower and unite those living with Darier Disease by fostering a supportive community, raising awareness for this rare condition, and bridging the gap between lived experience and scientific research.  

We are dedicated to amplifying voices, sharing stories, and driving advocacy that inspires connection, education, and hope for individuals and families around the world.

About the Founder

Genevieve Lee is the founder of Decoding Darier’s, a patient-led organization dedicated to connecting, supporting, and empowering individuals living with Darier’s disease. Diagnosed at age six, Genevieve has turned her personal journey with this rare skin condition into a mission to raise awareness and strengthen the global Darier’s community.

As a dedicated educator and advocate, Genevieve brings compassion and understanding to everything she does. Through Decoding Darier’s, she strives to create a space where patients and families can share experiences, access reliable information, and collaborate toward better care and research. Her vision is a future where every person with Darier’s disease feels seen, supported, and hopeful.

About Darier’s Disease

Darier’s disease is a rare genetic skin condition associated with changes in a gene called ATP2A2. It can look different from person to person. Common experiences include persistent skin changes, flare‑ups triggered by heat or friction, nail changes, and sensitive areas that need extra care. Diagnosis is made by a qualified clinician. Treatment plans vary and often combine medical care with everyday routines that reduce triggers and protect skin.

We provide practical guides for daily living, questions to ask your provider, and supportive language to share with family, schools, and workplaces. Our goal isn’t to replace medical advice—it’s to help you make the most of your appointments and feel understood between them.

Warrior Stories

Something my mother has always told me is that medicine is advancing all the time, and to not lose hope that someday there will be an effective cure!

Maya

Don’t let your condition hold you back. Wear that outfit you love. Go on that dream holiday. Smile at the person who may look twice. You don’t have to shrink yourself to escape notice

Jemma

No matter how many times you fall, what truly matters is that you keep getting up and fighting

Pablo

Something my mother has always told me is that medicine is advancing all the time, and to not lose hope that someday there will be an effective cure!

Maya

Upcoming Events

October 19th Walk

Walk with us to raise awareness and fund Darier’s Research for families worldwide. Register, start a team, or support from anywhere with a virtual option.