Our new Toolkit from Global Genes and The Disorder Channel is a result of four years of co-presenting workshops on how you can make your own short rare disease documentary on a very low budget.
We gathered advice and insights from several rare disease filmmakers on The Disorder Channel including:
- Kevin Alexander
- Bo Bigelow
- Daniel DeFabio
- Alexi LeVine
- Dina Rudick
- Kimberly Warner
And from rare disease podcasters, writers and researchers including:
- Dr. Annie Brewster
- Danny Levine
- Mary Morlino
- Liz Morris
- Kara Ryska
- Effie Parks
Film executive, author and rare mom Kelley Coleman.
There are so many benefits to telling your rare disease story! Often, things that whirl in our minds fall into sharper focus as we attempt to write them down or speak about them to others. Even if you never make your story public, this step will help you help you process and communicate your feelings. Crafting our stories can help heal us, which brings added benefits to those living with a rare disease. Narrative psychologists say that how you tell your story can impact your well-being. “You can’t totally control the things that happened to you in your life,” notes psychologist Jonathan Adler “But you have some say in how you make sense of it.”
Mary Morlino, Sarcoidosis Advocate
Inspiring or educating others with your story can take some planning. That’s what we’ve created our RAREly Told Stories Toolkit to help you take the first steps into crafting your rare narrative into something special. Download this toolkit below!
There’s an introduction to the ideas in this Toolkit as part of EveryLife Foundation’s webinar: Share Your Story Through Film – Watch The Recording Here
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