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 More

Tips 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 More

The 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 Worksheet

Tips 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.

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Tips 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 More

RAREly 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 Workshop

How 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 Tutorial

Pre-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 Tutorial

Shooting 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 Tutorial

Editing 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 Tutorial

How 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 Tutorial

Video Editing Basics

Learn the basics of video editing for rare disease films from filmmaker Lexi Pappas.

Watch Tutorial

Avoiding Jump Cuts

A brief look at how edits can create jump cuts and 3 techniques to avoid them showing up in your edits.

Watch Tutorial

B-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 Toolkit

How 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 Tutorial

Watch 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

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Lesley 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.

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Shundra 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 More

Shantel 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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