Rare diseases in the arts

If you know about a film, book or event that features a rare disease that could be added to this page please contact anja.helm@eurordis.org

Rare diseases in art

Understanding the Hero

Curator: Piotr Bialas - TataStudio
Gdansk, Poland, 2019
All physical disabilities

Rare diseases in dance 

NYCBallet Access Programs

USA, 2018
All physical disabilities

Rare World: Investigating Social Support in Rare Disease and Common Chronic Illness Communities

USA, 2018
All rare diseases

Rare diseases in documentaries


Director: Anne-Dauphine Julliand
France, 2017
Neuroblastoma, Pulmonary arterial hypertension,  Epidermolysis Bullosa

Tess Is Not Alone: A USP7 Story

Director: Bo Bigelow
USA, 2017
USP7-Related Diseases

Up for Air

Director: Artem Agafonov
USA, 2016
Cystic fibrosis

Special Blood

Director: Natalie Metzger
USA, 2016
Hereditary Angioedema (HAE)

Menkes Disease: Finding Help & Hope

Director: Daniel DeFabio
USA, 2015
Menkes disease

Alive & Well

Director: Josh Taft
USA, 2013
Huntington's disease

Mon fils, un si long combat

Director: Eglantine Eméyé
France, 2013
Autism, eplilepsy

Our Curse

Director: Tomasz Śliwinski
Poland, 2013
Congenital central hypoventilation syndrome

Dusty’s Trail: Summit of Borneo

Director: Catherine Jayasuriya
USA, 2013
Duchenne muscular dystrophy


Director: Josh Taub
USA, 2013
Charcot Marie Tooth Disorder

Facing Fabry Together

Canada, Brazil, Germany, and France,  2013
Fabry disease


Director: Jon Kent
USA, 2011
Williams syndrome

Music by Prudence

Director: Roger Ross Williams
USA, 2010
Arthrogryposis syndrome

Darius Goes West: the roll of his life

Director: Logan Smalley
USA, 2007
Duchenne Muscular Dystrophy


Director: Talia Osteen
USA, 2006
Leber optic atrophy


Rare diseases on film 

The Adventures of Lucy

Director: Teddy Valentovich
USA, 2017
Rare cancer


Director: Stephen Chobsky
USA, 2017
Treacher Collins syndrome 

Contando Estrellas

Director: Josevi García Herrero
Spain, 2017

The Big Sick

Director: Michael Showalter
USA, 2017
Adult-onset Still disease

Brain on fire

Director: Gerard Barrett
USA, 2016
anti-NMDA receptor encephalitis


Director:  Vibeke Idsoe
Norway, 2016
Hypertrichosis lanuginosa congenita 


Director: Carl Mason
USA, 2015
Neimann-Pick type C

The Theory of Everything

Director:  James Marsh
UK, 2014
Motor neuron disease

Cuerdas (Strings)

Director: Pedro Solís García
Spain, 2014

Margarita With a Straw

Director: Shonali Bose
India, 2014
Cerebral palsy


Director: Louise Archambault
France, 2013
Williams syndrome

Here. Us. Now

Director: Rudy Poe
USA, 2012
Niemann-Pick Type C

La Guerre est Déclarée

Director: Valérie Donzelli
France, 2011
Childhood cancer


Director: Jonathan Levine
USA, 2011
Schwannoma neurofibrosarcoma

Extraordinary Measures

Director: Tom Vaughan
USA, 2010
Pompe disease 


Director: Sanjay Leela Bhansali
India, 2010


Director: R. Balakrishnan
India, 2009
Hutchinson-Gilford progeria syndrome

Le Scaphandre et le Papillon

Director: Julian Schnabel
France, 2008
Locked-in syndrome

The Cake Eaters

Director: Mary Stuart Masterson
USA, 2007
Friedreich's ataxia

My Flesh and Blood

Director: Jonathan Karsh
USA, 2003
Different disabilities

The Tic Code

Director: Gary Winick
Tourette syndrome

The Mighty

Director: Peter Chelsom
USA, 1998
Morquio A

Lorenzo's Oil

Director: George Miller
USA, 1992

My Left Foot

Director: Jim Sheridan
Ireland, 1989
Cerebral palsy


Director: Peter Bogdanovich
USA, 1985
Craniodiaphyseal Dysplasia

The Elephant Man

Director: David Lynch
USA, 1980
Proteus syndrome

The Boy in the Plastic Bubble

Director: Randal Kleiser
USA, 1976
Severe combined immunodeficiencies (SCID)

The Pride of the Yankees

Director: Sam Wood
USA, 1943
Amyotrophic lateral sclerosis

Rare disease film festivals

Disorder: The Rare Disease Film Festival

USA, TBC 2019

Festival Uno Sguardo Raro

Rome, Italy, 31 January - 3 February 2019 

Rare diseases in literature

Chromosome Kids Like Me

Annette Fournier
USA, 2018
Chromosome abnormalities

El poder de una sonrisa

Mireia Monfort and Chica con Flequillo
Spain, 2016
Phelan McDermid syndrome

So Much To Say

Dr. Stephen Calculator
USA, 2018
Angelman Syndrome (AS)

Tous En Piste

Loïc Ballet, Patrick Ballet et les Amis d'Anna
France, 2018
Giant congenital melanocytic nevus and all visible congenital rare diseases

La prophétie de Dysplasia

Caroline Pistinier
France, 2018
Fibrodysplasia ossificans progressiva

The Zebra Alphabet

Aditi Kantipuly
India, 2018

Little Sundrop and the Unnamable Terrible Evil

Veronica Popa
Digital, 2018
Allan-Herndon-Dudley syndromch

The Boy Who Loved Too Much

Jennifer Latson
USA, 2017
Williams syndrome

Reach for Me: The Story of My Son Connor

Michael A. Boylan
USA, 2016
William’s Syndrome

Lea Löwenherz

Regina Nagel
Germany, 2015
Pediatric heart malformation 

La constelación Pica Pica

Isabel de Ron
Spain, 2015

Le voleur de brosses à dents

Eglantine Eméyé
France, 2015
Autism, eplilepsy

Mauricio of Uruguay

Sean Hepburn Ferrer
Uruguay, 2014
McCune-Albright syndrome

Deux petits pas sur le sable mouillé

Anne-Dauphine Julliand
France, 2014
Metachromatic leukodystrophy (MLD)

Une journée particulière

Anne-Dauphine Julliand
France, 2014
Metachromatic leukodystrophy (MLD)


R.J. Palacio
USA, 2012
Treacher Collins syndrome 






Page created: 09/03/2018
Page last updated: 07/12/2018
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