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RAREly Told Stories Films

Watch the RAREly Told Stories — documentaries and short films created by patients, caregivers, and advocates just like you!

Since 2021 Global Genes has partnered with The Disorder Channel to present workshop trainings to teach you what you need to know to make your rare disease story into a short film. Our resources cover not only the beginner’s basics of filmmaking but the aspects that are unique to rare disease documentaries.

These films can inspire others and create new connections for you to find allies in your advocacy work. 

This page features some of the films that have resulted from these workshops.

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.

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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.

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Watch the 2022 RAREly Told Stories

These rare disease patients participated in the RAREly Told Stories workshop from Global Genes and The Disorder Channel in 2022. Their films screened at Global Genes’ 2022 RARE Health Equity Summit.

Amy & Demi’s Scleroderma Journey

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WonderGirl Saida

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Alanna Shares Her Second RAREly Told Story

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