Every Gorlin syndrome journey is unique. Behind each diagnosis is a person, a family, and a lived experience filled with challenges, resilience, advocacy, and hope. When individuals share their stories, they do more than raise awareness — they create connection.

Your story can:

• Help someone newly diagnosed feel less alone
• Educate friends, providers, and the broader public
• Highlight the need for continued research and support
• Strengthen the voice of the Gorlin syndrome community

Whether it’s a few sentences, a longer reflection, or a photo, your experience matters.

This Rare Disease Day, we encourage you to share what Gorlin syndrome has meant in your life — what you wish others understood, what you’ve learned, and what gives you hope for the future.

Together, our voices make rare visible.

Why is the RRD Mascot a Zebra?

The zebra is the mascot for Rare Disease Day because of the medical saying:

“When you hear hoofbeats, think horses, not zebras.”

This phrase is taught in medical school to encourage doctors to consider common conditions first before rare ones. However, for people with rare diseases, this mindset can lead to misdiagnosis, delayed diagnosis, or being overlooked. The zebra symbolizes the importance of recognizing and diagnosing rare conditions, reminding medical professionals and the public that rare diseases do exist and should be considered.

The zebra has since become a powerful symbol for the rare disease community, representing the uniqueness of each rare disease and the collective strength of those affected.