Community Events

RAREly Told Stories Workshop

February 14, 2024

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Have you wanted to tell the story of your life with a rare disease as a documentary or a short video?

Global Genes has partnered with The Disorder Channel to present workshop trainings to get you ready to make your story into a short film. This workshop will provide you with the tools and information necessary to get started!

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The one hour “RAREly Told Stories” workshop empowers you to transform your rare disease journey into a compelling short video. Co-presented by Global Genes and The Disorder Channel, this training will address some of the unique considerations in telling a rare disease story. Award winning rare disease documentary filmmakers will guide you through the basics of low cost DIY filmmaking. Video as a medium is a powerful way of reaching a wide audience and evoking empathy. Learning to craft your narrative visually not only helps you raise awareness about your specific rare condition, but can also shed light issues facing the broader rare disease community. You can use your story to inspire others, share the patient voice, help drive new research forward, and advocate for better healthcare policies. 

Your story matters, and this workshop can help you capture it and share it.

This event is open to anyone personally connected to rare disease who has a story of the patient experience they want to share.

Participants who attend this workshop and complete a short film are invited to submit their finished work to Global Genes. Three short films will be selected to screen at a 2024 Global Genes event.

Register to Attend

Related Resources & Watch the 2023 Workshop

About the Workshop Faculty

Melody Joy Paine
Founder of Imperfect Joy

  • Director of the films in the Imperfect Joy Rare Patient Film Collection
  • Her film “#Aubsessed” is streaming on The DISORDER Channel
  • Her film “From the Heart” screened with other RAREly Told Stories at Global Genes Health Equity Forum 2023

Kimberly Warner
Founder of Unfixed Media, Award-winning filmmaker 

  • Screened both narrative and documentary films in festivals around the globe
  • Invisible Disabilities Association’s 2020 Media Impact Award recipient
  • Creator of 4 series on chronically ill adults streaming on The DISORDER Channel
  • Diagnosed with Mal de Débarquement Syndrome, a rare neurological condition, in 2015

Daniel DeFabio
Director of Community Engagement at Global Genes

Co-founder The DISORDER Channel
His documentary on his son Lucas and Menkes Disease won best documentary at The Cinema Touching Disability Film Festival.