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Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate and Rare Dad Daniel DeFabio
RARE MAMAS RISING- EPISODE 24
Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate & Rare Dad Daniel DeFabio
At the age of 12 months, Daniel's first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like, Daniel began telling Lucas's story with a short documentary film. That film led to Daniel Co-founding DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing rare diseases. One of Daniel's stories about Lucas won the 2015 Global Genes Rare Patient Story Award. Daniel was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet's first animated series. He has created videos and marketing materials for bio-techs, hospitals, and most major movie studios, as well as American Cinematographer, PBS, TNT's "The Closer," and HBO's "Curb Your Enthusiasm." He has also served as a blogger in residence for Courageous Parents Network. Daniel currently works as the Director of Community Engagement for Global Genes. Engaging the rare community is his forte, indeed! Whether telling his own story or helping others tell theirs, Daniel is a magnetic force attracting, connecting, and charging the rare community.
EPISODE HIGHLIGHTS
- The path to Lucas' Menkes Syndrome diagnosis
- The Disorder Channel and its mission
- Why telling our stories is important
- Global Genes programs and resources
- What being in the rare community means to Daniel
- Daniel's best learnings for other rare parents
LINKS & RESOURCES MENTIONED
Daniel DeFabio
https://www.thedisordercollection.com/danieldefabiospeaker
Menkes Syndrome
https://themenkesfoundation.org/research
DISORDER
https://www.thedisorderchannel.com
https://www.linkedin.com/company/disorder-the-rare-disease-film-festival
https://www.instagram.com/disorderrarediseasefilms/
https://www.facebook.com/rarediseasefilmfestival
Global Genes
https://globalgenes.org/
Courageous Parents Network
https://courageousparentsnetwork.org/
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
View all episodes
By Nikki McIntosh
5
2929 ratings
RARE MAMAS RISING- EPISODE 24
Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate & Rare Dad Daniel DeFabio
At the age of 12 months, Daniel's first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like, Daniel began telling Lucas's story with a short documentary film. That film led to Daniel Co-founding DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing rare diseases. One of Daniel's stories about Lucas won the 2015 Global Genes Rare Patient Story Award. Daniel was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet's first animated series. He has created videos and marketing materials for bio-techs, hospitals, and most major movie studios, as well as American Cinematographer, PBS, TNT's "The Closer," and HBO's "Curb Your Enthusiasm." He has also served as a blogger in residence for Courageous Parents Network. Daniel currently works as the Director of Community Engagement for Global Genes. Engaging the rare community is his forte, indeed! Whether telling his own story or helping others tell theirs, Daniel is a magnetic force attracting, connecting, and charging the rare community.
EPISODE HIGHLIGHTS
- The path to Lucas' Menkes Syndrome diagnosis
- The Disorder Channel and its mission
- Why telling our stories is important
- Global Genes programs and resources
- What being in the rare community means to Daniel
- Daniel's best learnings for other rare parents
LINKS & RESOURCES MENTIONED
Daniel DeFabio
https://www.thedisordercollection.com/danieldefabiospeaker
Menkes Syndrome
https://themenkesfoundation.org/research
DISORDER
https://www.thedisorderchannel.com
https://www.linkedin.com/company/disorder-the-rare-disease-film-festival
https://www.instagram.com/disorderrarediseasefilms/
https://www.facebook.com/rarediseasefilmfestival
Global Genes
https://globalgenes.org/
Courageous Parents Network
https://courageousparentsnetwork.org/
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
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