Daniel DeFabio, Director of Community Engagement and Education at Global Genes, Co-Founder of Disorder: The Rare Disease Film Festival, and rare disease father, discusses Global Genes’ patient and advocate initiatives.
Global Genes is an organization with a focus on providing support, education, and research opportunities for patients, advocates, and families impacted by rare diseases. Through events, virtual communities, and other initiatives, patients and advocates can find community through helping and learning from each other. Global Genes’ goal through their initiatives is to spread awareness and provide actionable next steps for patient advocates.
One of these initiatives includes Mr. DeFabio’s RAREly Told Stories program. This program provides resources that teach patients how to make their own short documentaries through workshops, webinars, and toolkits. To view these resources, click here.
As a filmmaker, Mr. DeFabio’s Rare Disease Film Festival is an additional resource. Started in 2015, the organization’s short films are shown at conferences and events with corresponding panel discussions, as well as on a streaming channel, The Disorder Channel.
Mr. DeFabio stresses the importance that media plays in the rare disease space today to amplify patient stories. He points out that industry partners can use this type of content as one of their earliest steps to understand the population they are looking to serve. This can occur before any formal research is conducted to shape next steps and know which questions to ask.
Visit Global Genes at https://globalgenes.org/ for more information.
To learn more about rare disease advocacy, visit https://checkrare.com/rare-disease-advocacy-2/
