Daniel DeFabio’s info is below.

This is just a quick list of some news and events for The Disorder Channel. Please check our home page for more.

Join our Film Club where we watch a selected rare disease film (on your own) and then gather for a discussion group. Our first meeting is March 18, 2026 at 8:30pm ET. You can register here.

Our latest film “Life After Diagnosis Day” premiered April 16, 2023

June 5, 2023 Daniel speaks at BIO, Boston after a screening of our films.

May 2023 We led our RAREly Told Stories Workshop on how to make a rare disease documentary with Global Genes.

June 26th 2022 Bo Bigelow received the Rare Impact - Caregiver and Advocate Award from NORD in Cleveland.

For info on Menkes Syndrome go here.
For info on USP7 or Hao-Fountain Syndrome go here.

If you’d like to screen some of our films go here.

For info on Daniel DeFabio’s appearances as a speaker go here.
For Daniel’s role as Director of Community Engagement at Global Genes go here.

Email daniel (a t) rarediseasefilmfestival.com
or Bo (a t) rarediseasefilmfestival.com