Education
RAREly Told Stories Resources
Tips and resources for telling your rare disease story on video
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.
First Steps
The best way to start is to attend one of our virtual workshops. We have two coming up in 2024 but if you miss them or just want a deeper dive into some of the resources used in the workshops we have them collected on this page.
A Deeper Dive
You can use the resources listed below to learn at your own pace.
We suggest the order they are listed in but feel free to jump to what interests you most.
Learn How to Make Your Own Rare Disease Film
One of the questions most often asked is “How can I make a film about my rare disease?” or “If I make a film with my phone will it be good enough for your festival?”
Learn MoreTips for Beginning (Rare Disease) Filmmakers
These tips about the physical aspects of filmmaking will help make your film look better, including camera positioning and lighting.
Learn MoreThe Special Needs Mom Podcast Worksheet
Learn how to find the key moments in your story. Kara Ryska shared this guide when she spoke at Summit 2022.
Download WorksheetTips To Interview Well For the Interviewee
Think of this not as a phone call on Zoom or yet another office meeting — this is more like being interviewed for television.
Learn MoreTips To Interview Well For the Interviewer
Most of what follows should be done before the recording begins. These tips may not apply for live Zoom interviews.
Learn MoreRAREly Told Stories Workshop
Have you wanted to tell your rare disease story as a documentary or a short video? This workshop help you get you ready to make your story into a short video or documentary.
Watch WorkshopHow Sharing Your Story Can Help Raise Awareness
Parvathy Krishnan, Effie Parks, Luisa Leal, and Daniel Defabio talk about sharing your rare disease story to raise awareness.
HANDling Your Story:
Tips For Telling Your Story
Filming Tips from More Industry Experts
Pre-Production Part 1
Rare disease filmmaker Dina Rudick of Anthem Media talks us through the steps as part of the RAREly Told Stories workshop series.
Watch TutorialPre-Production Part 2
The basics of how to plan for a rare disease documentary. Filmmakers call it pre-production but you’re probably already good at it.
Watch TutorialShooting a rare film on your phone
Kimberly Warner talks the basics of how to use your phone to shoot video for a rare disease documentary and still get great results.
Watch TutorialEditing Video
How and Why We Edit
A very basic introduction to how video editing software works and why you would make edits to a video.
Watch TutorialHow to Edit a Video Documentary
Emmy nominated filmmaker Jon Garcia goes over the basics of cutting together an interview scene and adding b-roll footage to start editing your rare disease documentary.
Watch TutorialVideo Editing Basics
Learn the basics of video editing for rare disease films from filmmaker Lexi Pappas.
Watch TutorialAvoiding Jump Cuts
A brief look at how edits can create jump cuts and 3 techniques to avoid them showing up in your edits.
Watch TutorialB-Roll Basics
What is B-roll? When should you use it? How to shoot B-roll? What to do if you don’t have any B-roll.
Download ToolkitHow to Fix Vertical Videos
How can you make a vertical video fit in your horizontal video. Here are a couple of the common work arounds.
Watch TutorialWatch the 2023 RAREly Told Stories
“Miss Diagnosis” breaking the rules with Tara Rule
Learn filmmaking tips from Tara Rule, a filmmaker diagnosed with Ehlers-Danlos syndrome, and watch her award-winning film
Learn MoreLesley Holroyd on her short film “Born to be Heard”
Watch an award-winning film from Lesley, who lives with congenital adrenal hyperplasia, and what she learned about filmmaking.
Learn MoreShundra Wooten on her short film “Keep It Moving”
Watch the short film that Shundra Wooten created after her Spinocerebellar Ataxia 3, and what she learned about filmmaking.
Learn MoreShantel Sonier on “Glitching with Nick”
Watch the short film “Glitching with Nick” that Shantel, a rare mom and caregiver to Nick, made, and discover what she learned during the filmmaking process.
Learn More
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