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 Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email [email protected]

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