27 min

Rare Together, Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes Once Upon A Gene

    • Personal Journals

Rare Together Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes
Dan DeFabio and Bo Bigelow founded The Rare Disease Film Festival and have just created The Disorder Channel, accessible through Amazon Fire and Roku. Their work is connecting patients and families, raising awareness and inspiring a lot of conversations.
Global Genes is having a virtual 10 day summit, September 15th - 25th, 2020. On September 16th, 17th and 18th, they're holding a watch party with Dan and Bo. This event is free for patients and advocates, so check it out!

EPISODE HIGHLIGHTS
Dan, how long did you think about creating The Rare Disease Film Festival and why did you want Bo to be a part of it?
Bo, what did you think you could add to The Rare Disease Film Festival?
Tell me about the first festival you had.
Bo, how did you feel after the first festival weekend concluded?
Due to the most recent event in New York City being cancelled, where did the idea to pivot into a tv channel come from?
How does someone create a film?
Tell us about the event with Global Genes that's coming up in a few weeks. 

LINKS AND RESOURCES MENTIONED
The Rare Disease Film Festival
https://www.rarediseasefilmfestival.com/
The Disorder Channel
https://www.thedisordercollection.com/
Global Genes
https://globalgenes.org/
A RARE Patient Advocacy (un)Summit
https://globalgenes.org/event/live/
ONCE UPON A GENE - EPISODE 015 - Films and Fatherhood
https://bit.ly/34xmJfH
ONCE UPON A GENE - EPISODE 028 - Rare Disease Trailblazer and Co-Founder of Disorder - The Rare Disease Film Festival
https://bit.ly/2YzhAQy
How To Make Your Own Rare Disease Film
https://www.rarediseasefilmfestival.com/blog/2020/3/2/how-to-make-your-own-rare-disease-film

TUNE INTO THE ONCE UPON A GENE PODCAST
Spotify
Apple Podcasts
Stitcher
Overcast

CONNECT WITH EFFIE PARKS
Website
https://effieparks.com/
Twitter
https://twitter.com/OnceUponAGene
Instagram
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/

Rare Together Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes
Dan DeFabio and Bo Bigelow founded The Rare Disease Film Festival and have just created The Disorder Channel, accessible through Amazon Fire and Roku. Their work is connecting patients and families, raising awareness and inspiring a lot of conversations.
Global Genes is having a virtual 10 day summit, September 15th - 25th, 2020. On September 16th, 17th and 18th, they're holding a watch party with Dan and Bo. This event is free for patients and advocates, so check it out!

EPISODE HIGHLIGHTS
Dan, how long did you think about creating The Rare Disease Film Festival and why did you want Bo to be a part of it?
Bo, what did you think you could add to The Rare Disease Film Festival?
Tell me about the first festival you had.
Bo, how did you feel after the first festival weekend concluded?
Due to the most recent event in New York City being cancelled, where did the idea to pivot into a tv channel come from?
How does someone create a film?
Tell us about the event with Global Genes that's coming up in a few weeks. 

LINKS AND RESOURCES MENTIONED
The Rare Disease Film Festival
https://www.rarediseasefilmfestival.com/
The Disorder Channel
https://www.thedisordercollection.com/
Global Genes
https://globalgenes.org/
A RARE Patient Advocacy (un)Summit
https://globalgenes.org/event/live/
ONCE UPON A GENE - EPISODE 015 - Films and Fatherhood
https://bit.ly/34xmJfH
ONCE UPON A GENE - EPISODE 028 - Rare Disease Trailblazer and Co-Founder of Disorder - The Rare Disease Film Festival
https://bit.ly/2YzhAQy
How To Make Your Own Rare Disease Film
https://www.rarediseasefilmfestival.com/blog/2020/3/2/how-to-make-your-own-rare-disease-film

TUNE INTO THE ONCE UPON A GENE PODCAST
Spotify
Apple Podcasts
Stitcher
Overcast

CONNECT WITH EFFIE PARKS
Website
https://effieparks.com/
Twitter
https://twitter.com/OnceUponAGene
Instagram
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/

27 min