Ondine 40 minutes, addresses CCHS directed by Tomasz Śliwiński Academy Award nominated filmmaker Sliwinski (director of “Our Curse”) crafts a thrilling narrative around the disease that affects his son. A romance set in the world of Poland’s goth rock clubs where not just relationships but a life hangs in the balance. CCHS is also called “Ondine’s Curse”.

Faithfully 12 minutes, addresses Retinitis Pigmentosa directed by Chad Smathers & Kirsten Pfeiffer Prom night takes unexpected turn for a teen who’s dad has a rare disease.

PKU Protein Kills Us 9 minutes, addresses PKU directed by Manolo Campos García
In this dystopian future thriller surviving the apocalypse is even harder if you have PKU. A sci-fi solution could be the answer.

Uncovered 20 minutes, addresses Thyroid Cancer directed by Ben Meredith Based on a true story, this narrative short film shows how the type of insurance a person has, directly determines the quality of care they receive. Two characters find themselves suddenly faced with a similar rare diagnosis, but their journeys to get healthcare could not be more different.

Finding our Voice 35 minutes, addresses Apraxia directed by Evan Gardner Childhood apraxia is explored in this documentary from a filmmaker who has apraxia himself. Gardner searches for answers and information regarding what makes Apraxia so difficult to diagnosis.

Overexposed 20 minutes, addresses EPP directed by Andrea Minoglio In this Italian documentary 5 individuals with Erythropoietic Protoporphyria describe their love-hate relationship with sunlight.

Me, My Sister and Blau 8 minutes, addresses Blau Syndrome directed by Felix Townsin & Cheryl Lynn-Townsin
In October 2019, Lexi Townsin lost her life to Blau syndrome (early onset sarcoidosis). Lexi’s 9 year old brother Felix is determined to carry out her wish to find a cure so that others do not suffer like she did. This is a story of love, dedication and courage.

Life Through a Lens 11 minutes, addresses APBD directed by Jeff Levenson In this documentary Hollywood on-set photographer and artist Robert Zuckerman watches his career opportunities dwindle as he faces Adult Polyglucosan Body Disease (APBD).

7 minutes, addresses eight rare diseases directed by Daniel DeFabio

11 families gathered at Disorder: The Rare Disease Film Festival in 2019 discuss their struggles with rare diseases like Bosch-Boonstra-Schaaf optic atrophy syndrome, ichthyosis, EB, Syngap1, Menkes Syndrome, ADCY5 related Dyskinesia, Okur Chung, and HSAN1E

3D computer animated short, a CGI depiction of a boy in wheelchair getting left out of schoolyard fun and what it takes to include him. Directed by Abel Goldfarb.

This short film from Greece offers a fictionalized depiction of PGAD, one of the most unique rare disorders we’ve come across to date, and we’ve seen A LOT of rare disease films. Directed by Calliopi Villy Kotoula.

“Our Friend Jon” is a feature length documentary about a group of young filmmakers, each with a disability, who came together to film the horror movie script left behind when their friend Jon Hernandez died of a rare disease. It is directed by Edward Payson and the cast includes Maria Olsen (“Percy Jackson and the Lightning Thief”).

Le Chamber Noir

This creepy narrative short is set in France, 1910. As her mother suffers from a mysterious illness that she intends to hide, the young Cassandre feels a growing presence in her home ... What shadow hides in the silence of the dark room?

Unconditional: Raising a Glass Child with a PACS1 Sibling

The phrase glass child refers to a sibling who might be neglected or given less attention because their brother or sister has more intense or dramatic needs. This is not only due to rare disease but that’s a striking example.
Directed by Jon Dorflinger, who we met at our 2017 festival.

In the short film “Deep Blue Breath” several well known Hollywood actors come together to make a film envisioned by a boy with VADER syndrome. Sean Astin (“Lord of the Rings”), Natasha Gregson Wagner (“High Fidelity”) and Ernie Hudson (“Ghost Busters”) are directed by Patricia Cardoso (“Real Women Have Curves”) in this touching story that makes leaps into animation and special effects as a sick boy imagines his battle with his disorder.

IMAGINE (directed by Carl Mason, USA 2015, 10 minutes) "IMAGINE" follows the story of Millie, a little girl who dreams of being a dancer, yet suffers from Niemann Pick Type C; an extremely rare, incurable disease which causes neurological decline and dementia. 

MENKES DISEASE: FINDING HELP AND HOPE (directed by Daniel DeFabio, USA 2015, 12 minutes) Academy Award nominated actress Mary McDonnell narrates this look at a rare fatal genetic disorder called Menkes Disease. It prevents boys from metabolizing copper. Boys who get treatment in the first ten days of life can have long and relatively normally lives. If the disease is not detected and treated that early their lives are much shorter and far from normal. This short documentary aims to explain some of the basics of the disease and treatment but also provide context with examples from three families across the globe showing that there is life after this terrible diagnosis. And that life is more joyful and hopeful than you might expect.

TESS IS NOT ALONE: A USP7 STORY (directed by Bo Bigelow, USA 2017, 8 minutes) When the parents of 7-year-old Tess Bigelow learned of her ultra-rare genetic disorder, they believed she was the only one of her kind. This short documentary tells the story of their worldwide quest to find others like Tess.  

Two of a Kind, shows life with twin boys with Pfeiffer Syndrome living in Ireland, directed by Donal Moloney

CUERDAS (directed by Pedro Solís García, Spain 2014, 10 minutes) "Cuerdas" 2014 winner of the the Goya ® award for Best Spanish animated short film. The film describes a tender story of friendship between two special children. 

OUR CURSE (pl. NASZA KLĄTWA) (directed by Tomasz Śliwinski, Poland 2013, 27 minutes) Our Curse was nominated for the Academy Award for Best Documentary (Short Subject) at the 87th Academy Awards. The film is a personal statement of the director and his wife, who have to deal with a very rare and incurable disease of their newborn child – the Ondine’s Curse (also known as CCHS, congenital central hypoventilation syndrome). People affected with this disease stop breathing during sleep and require a lifetime mechanical ventilation on a ventilator. The film shows the process of taming fear associated with the disease. 

UP FOR AIR (directed by Artem Agafanov, USA 2016, 1 hr 3 min) "Up For Air" explores the human spirit's fight for survival through the eyes of Jerry Cahill, a 53-year-old pole-vaulter who continues to fight respiratory degeneration, depression and a potentially fatal double-lung transplant. Shot over a period of five years, "Up For Air" captures the fragility of life with a chronic, fatal illness as it disrupts physical, mental, interpersonal and professional well-being, and how the intersection of dedicated athleticism, self discipline, and community outreach can achieve unprecedented outcomes.

SPECIAL BLOOD (directed by Natalie Metzger, USA 2016, 1 hr) Failed by a healthcare system that is largely ignorant of their existence, four patients with a life-threatening, rare disease learn to find strength in each other and their small, but strong community.

THE ADVENTURES OF LUCY (directed by Teddy Valentovich, USA 2016, 15min) In order to defeat the dark manifestation of her cancer, a young girl must use the power of imagination to overcome her fears.