Daniel DeFabio

Daniel DeFabio is a patient advocacy professional and a champion for rare disease families, bringing lived experience and creative advocacy to the community. After his son Lucas was diagnosed with Menkes Syndrome, Daniel co founded DISORDER: The Rare Disease Film Festival and later co created The Disorder Channel, elevating patient stories as catalysts for increasing community and industry engagement. His work spans filmmaking, communications, and nonprofit work, with a focus the emotional, logistical, and financial realities families face across the diagnostic and treatment journey. Daniel has written for Rare Revolution Magazine, Courageous Parents Network, The Mighty, Global Genes, and the book Positively Rare.