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Daniel DeFabio
Co-Founder at DISORDER: The Rare Disease Film Festival


Daniel DeFabio is co-founder of DISORDER: The Rare Disease Film Festival. He is father to a 10-year-old son with a rare genetic disorder called Menkes disease.

Daniel met his fellow film festival co-founder, Bo Bigelow, at an advocacy conference.  Daniel was immediately impressed with how much awareness work Bo had accomplished in the short time since learning he needed a diagnosis for his daughter, Tess. Bo liked the fact that Daniel had made a documentary about his son Lucas' disorder, since Bo had made some films himself.

Daniel’s work in the rare disease community extends to authoring pieces about Menkes Disease for The Mighty. One of these stories won the 2015 Rare Patient Story Award from Global Genes.

He was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet's first animated series. He has created videos and motion graphics for American Cinematographer, PBS, bio-techs, hospitals, TNT's “The Closer” and HBO's “Curb Your Enthusiasm”. He is a graduate of Boston College and DISORDER is the second film festival he has founded. In 2008 he founded the Ballston Spa Film Festival in his hometown of Ballston Spa, New York.

Agenda Sessions

  • Welcome Remarks

  • Panel Discussion and Q&A

  • Closing Remarks


Speakers at this event