Daniel DeFabio

Director, Community Engagement at Global Genes

Speaker

At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like Daniel began to tell Lucas’ story with a short documentary. That film led to Daniel co-founding DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing any of the more than 7,000 rare diseases.

One of Daniel’s stories about Lucas won the 2015 Rare Patient Story Award from Global Genes. His award-winning 12 minute documentary on Menkes Syndrome is narrated by Oscar nominee Mary McDonnell. He has written for Video Maker Magazine, Rare Revolution Magazine, Courageous Parents Network, The Mighty, Boing Boing, GEEK Magazine, and the new book “Positively Rare”. He currently works as Global Genes’ Director of Community Engagement.