Learn About the Rare Disease Community: Meet Daniel DeFabio

When Daniel DeFabio shared his son Lucas’ journey with #MenkesSyndrome, it ignited a profound sense of connection among families facing similar challenges around the world.

His openness in sharing their experiences not only raised awareness but also fostered a supportive community for those navigating life with a rare disease. Now, as a dedicated advocate, Daniel is committed to supporting other families like his own by providing resources, sharing knowledge and amplifying the voices of those impacted by rare diseases.

Through his work, he strives to drive meaningful change, ensuring that no family feels alone in their journey.

Watch as he shares his powerful #RAREis One story—his experiences as a parent, his dedication to advocacy and his passion for making a lasting impact in the rare disease community.