This week's interview is with Daniel DeFabio, whose son had Menkes Syndrome (aka Kinky Hair Syndrome). Menkes is a genetic disorder that affects the body's metabolism of copper, which can impact basic functions and life span as well. Daniel works at Global Genes in community engagement, and helped create The Disorder Channel and Disorder: The Rare Disease Film Festival. He and I discussed regrets with parenting, how his son's life was different because of Menkes, the impact of The Rare Disease Film Festival, and much more!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And follow me on Instagram @risforrarepodcast!
The Disorder Channel is free on Roku and Fire TV devices. www.thedisorderchannel.com
For more on Global Genes programs and events: www.globalgenes.org
Rare Disease Film Festival Website - https://www.rarediseasefilmfestival.com/
Follow Daniel DeFabio on Facebook - https://www.facebook.com/rarediseasefilmfestival
Follow Daniel DeFabio on Instagram - https://www.instagram.com/disorderrarediseasefilms/
Disorder: The Rare Disease Film Festival on Linkedin - https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/
