Daniel DeFabio
Is often asked to speak. Some of the topics he covers include:
Dealing with the loss of a young child. Grieving.
Adapting your mindset in the face of adversity.
The beginner’s guide to a rare disease diagnosis.
Parenting differently knowing my son’s life would be short.
How to make films. How to run a film festival.
How to tell your story. How to tell your rare disease story.
How to tell your story in film.
Including the patient voice in research.
Photos and bio are offered below.
Videos:
Daniel’s award-winning 12 minute documentary on Menkes Syndrome
You can watch Daniel co-host the video podcast Once Upon a Gene TV here.
Daniel’s 2024 interview with OrangeSocks Podcast about Menkes Disease.
Daniel’s July 2024 interview on A Place of Yes with Heather Straughter.
Daniel on a panel for RAREis One Storytelling Webinar from Amgen- Feb. 2024.
Watch Daniel co-host the red carpet for 2022 Rare Disease Champions of Hope here.
Watch Daniel co-host the show Pain Points.
Daniel on two Global Genes Summit 2023 panels :
Grieving Diagnosis, Lack of Diagnosis and Loss
Communicating with HCPs about your rare disease
A Dad's Growth Through Grief | Daniel + Lucas - Fenrici video blog 6/15/22
Menkes Disease - A Day in the Life - RDReport November 2015
Tina, Lucas and Daniel on The Mighty Live - January 2017 - no audio at the start
Daniel hosting Global Genes’ series on getting to gene-based diagnosis.
- Making Decisions about Genetic Testing, Gene Therapy, and Clinical Trials
- Diagnosis or No Diagnosis: What's Next? Finding Your Way w Genetic Testing
Daniel on a panel for Grieving and Living with Uncertainty.
Podcasts appearances:
On One Condition podcast with Sylvain Berthelot Oct. 23, 2024
Rarely Normal podcast with Lindsay Weekes Oct. 22, 2024
Confessions of a Rare Mama Sept. 17, 2024 Eight Types of Advocacy
A Place of Yes podcast with Heather Straughter July 18, 2024
Orange Socks podcast June 19, 2024
When Autumn Comes podcast on Storytelling June 15, 2024
Once Upon a Gene podcast with Effie Parks Oct. 19, 2023
Stronger Everyday podcast with Bo Bigelow Sept. 6, 2023
Two Disabled Dudes podcast with Sean and Kyle August 28, 2023
Confessions of a Rare Mama podcast with Jillian Arnold June 19, 2023
Life with Jamie podcast June 1, 2023
I Don't Know How You Do It podcast with Jessie Fein Feb. 28, 2023
The Rare Life podcast with Madeleine Cheney Feb. 28, 2023
Cooking on Wheels with Gabby DiSalvo Feb. 28, 2023
Rare Mamas Rising podcast with Nikki McIntosh Feb. 15, 2023
When Autumn Comes podcast Dec. 22, 2022
Signalise: a Dazzle4Rare podcast Dec. 13, 2022
Enabled Disabled podcast with Gustavo Serafini Sept. 13, 2022
Fenrici podcast June 17, 2022
When Autumn Comes June 15, 2022
Be The Good June 14, 2022
We Are Brave Together March 23, 2022
Special Needs Moms podcast Feb. 10, 2022
A Rare Reality Jordan’s Guardian Angels podcast Jan. 24, 2022
Unbroken: Healing through Storytelling podcast Dec. 8, 2021
Two Disabled Dudes podcast “Superheroes” Oct. 17, 2021
Raising Rare podcast August 8, 2021
The Rare Disorder podcast July 16, 2021
R is for Rare podcast July 15, 2021
Special Father’s Network Dad to Dad podcast Sept. 11, 2020 two episodes
Grey Genetics Patient Stories podcast 9/1/20
Being Dad, Dadicated Podcast December 2020
4 episodes of Once Upon a Gene in 2020 and 2021
The Beginners Guide to Rare Disease - January 14, 2021
Beyond Quarantine: Acceptance, Empathy, and a Better Normal - May 28, 2020
Films and Fatherhood - January 30, 2020
Daniel DeFabio on Disorder: The Rare ... - DNA Today episode #67
Publicity photos:
Rare Stories
Whatever it is, the way you tell your story online can make all the difference.
Appearances on:
Films directed by Daniel:
Life After Diagnosis Day (2023)
Celebrating Caren (2021)
Bad days, Good Days Rare Days (2020)
Menkes Disease: Finding Help & Hope (2015)
Writing:
Daniel wrote chapter 3 of 21 in “Positively Rare”
Read articles he has written on his son Lucas’ rare disease Menkes Syndrome.
Daniel’s blog posts as Blogger in Residence for Courageous Parent Network.
Daniel’s blog posts on The Mighty.
Daniel’s blog posts for D:RDFF.
Daniel was the lead author of the Toolkit: Rarely Told Stories
Daniel DeFabio short bio:
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 to tell Lucas’ story with a short documentary. 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 any of the more than 7,000 rare diseases.
One of Daniel’s stories about Lucas won the 2015 Rare Patient Story Award from Global Genes. His award-winning 12 minute documentary on Menkes Syndrome is narrated by Oscar nominee Mary McDonnell. In 2008 he founded the Ballston Spa Film Festival. He 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 American Cinematographer, PBS, RightRice, bio-techs, hospitals, most major movie studios, TNT’s “The Closer” and HBO’s “Curb Your Enthusiasm” among others.
He has written for Video Maker Magazine, Rare Revolution Magazine, Courageous Parents Network, The Mighty, Boing Boing, GEEK Magazine and the book Positively Rare.
He currently works as Global Genes’ Director of Community Engagement.
Daniel on Social Media:
https://www.facebook.com/rarediseasefilmfestival
https://www.instagram.com/disorderrarediseasefilms/
https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/
https://twitter.com/DisorderRare