Daniel DeFabio discusses the Rare Disease Film Festival, a relatively new event showcasing films from around the world which address the challenges of life with a rare disease. The first event was held in Oct of 2017 in Boston, MA.
Daniel states that the Film Festival believes increased awareness can connect patient families, inspire conversations about translation applications of current science, lead to new paths for research and save lives. These films put the often abstract and dire clinical information into the context of real people living their lives.
Daniel has written about the rare disorder Menkes Disease for The Mighty. One of these stories won the 2015 Rare Patient Story Award from Global Genes. He made a 12 minute documentary on Menkes Syndrome narrated by Oscar nominee Mary McDonnell. In 2008 he founded the Ballston Spa Film Festival.