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 second instance of the festival was in San Francisco, November 9 and 10, 2019.

THE DISORDER CHANNEL

Hope comes streaming in. The home for rare disease on TV. Our free OTT channel brings more than 100 films, videos and TV shows to the biggest screen in your home. Stories of patients facing rare diseases with strength and resilience.

Additionally some organizations license selections from our collection to screen at their public or private events.

SPEAKERS

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 have also lead workshops on rare storytelling and rare film making. We may also be able to arrange other speakers facing other rare diseases.