The goal of Rare Outreach Coalition is to create opportunities for education, awareness, conversations, and collaborations across multiple rare disease communities.
Currently we pursue this through three distinct (although often interconnected) initiatives:
disorder: The rare disease film festival
Our first event was held in October, 2017 in Boston. Our current plan is to offer the next instance of the festival in a different city in 2019.
7000 films wanted
We believe every rare disease should have a film. While we can't make 7000 films we are willing to help get a few made. We're currently seeking a good rare story to tell on film.
Bo Bigelow and Daniel DeFabio speak at conferences on the patient/caregiver perspective throughout the rare disease journey in general and on USP7 or Menkes Disease in particular. We may also be able to arrange other speakers facing other rare diseases.