Creativity is at the core of the rare disease community. People all around the world use the arts to raise awareness of rare diseases, to recognise the challenges and celebrate the moments of joy that come with living with a rare disease.
Below is a directory of rare disease films, art, books and more. If you would like your rare disease art to be added to this list please email eurordis@eurordis.org.
Understanding the Hero
Curator: Piotr Bialas — TataStudio
Gdansk, Poland, 2019
All physical disabilities
Kunstcongres
Amstelveen, Netherlands, February 2019
Rare and chronic disorders
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/D podcast series
University of Manchester
UK, launched 2019
All rare diseases
Life Without Boundaries
Maria Hadjidemetriou
USA, 2019
Thalassemia
Positive Care
Karina Sturm
Germany, 2019
Ehlers-Danlos
SANDO illness from the inside out
Director: Marcio Souza
Switzerland, 2019
SANDO
Pensavo di essere diverso
Director: Kemal Comert
Italy, 2018
X-Linked Pigmentary Reticulate Disorder
Et Les Mistrals Gagnants
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
Mon fils, un si long combat
Director: Eglantine Eméyé
France, 2014
Autism, epilepsy
Alive & Well
Director: Josh Taft
USA, 2013
Huntington’s disease
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
Bernadette
Director: Josh Taub
USA, 2013
Charcot Marie Tooth Disorder
Facing Fabry Together
Canada, Brazil, Germany, and France, 2013
Fabry disease
Embraceable
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
Blindsided
Director: Talia Osteen
USA, 2006
Leber optic atrophy
Ode to Joy
Director: Jason Winer
USA, 2019
Narcolepsy with Cataplexy
The Adventures of Lucy
Director: Teddy Valentovich
USA, 2017
Rare cancer
Wonder
Director: Stephen Chobsky
USA, 2017
Treacher Collins syndrome
Contando Estrellas
Director: Josevi García Herrero
Spain, 2017
Mastocytosis
The Big Sick
Director: Michael Showalter
USA, 2017
Adult-onset Still disease
Brain on fire
Director: Gerard Barrett
USA, 2016
anti-NMDA receptor encephalitis
Lovekvinnen
Director: Vibeke Idsoe
Norway, 2016
Hypertrichosis lanuginosa congenita
Imagine
Director: Carl Mason
USA, 2015
Neimann-Pick type C
The Theory of Everything
Director: James Marsh
UK, 2014
Motor neurone disease
Cuerdas (Strings)
Director: Pedro Solís García
Spain, 2014
Margarita With a Straw
Director: Shonali Bose
India, 2014
Cerebral palsy
Gabrielle
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
50/50
Director: Jonathan Levine
USA, 2011
Schwannoma neurofibrosarcoma
Extraordinary Measures
Director: Tom Vaughan
USA, 2010
Pompe disease
Guzaarish
Director: Sanjay Leela Bhansali
India, 2010
Quadriplegia
Paa
Director: R. Balakrishnan
India, 2009
Hutchinson-Gilford progeria syndrome
Le Scaphandre et le Papillon
Director: Julian Schnabel
France, 2007
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
USA, 1998
Tourette syndrome
The Mighty
Director: Peter Chelsom
USA, 1998
Morquio A
Lorenzo’s Oil
Director: George Miller
USA, 1992
Adrenoleukodystropy
My Left Foot
Director: Jim Sheridan
Ireland, 1989
Cerebral palsy
Mask
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, 1942
Amyotrophic lateral sclerosis
The Extraordinary Film Festival
Belgium, 7-11 November 2019
Disorder: The Rare Disease Film Festival
USA, TBC 2019
Festival A Rare Look
Rome, Italy, 31 January — 3 February 2019
As Escolhas que Fazemos
Madalena Rosa
Portugal 2022
CHARGE syndrome
La piccola aliena del pianeta 1p36. Ediz. a colori
Roberta Zoli
Italy, 2020
1p36 syndrome
FPIES – The Mystery that Made My Brother Sick
Corrie Barrie , Alanna Ping
English, 2019
“f-pies” – food protein-induced enterocolitis syndrome
Bobby B. Button and His Magic Button
Amy J. Magyar, Robert Beufford Barronbakomeul
English, 2019
Rare Urea cycle condition
Seltene Krankheiten
Manuela Stier, Daniela Schmuki, Simon Starkl
2019
All rare diseases
From Ironman to Wheelchair and Back (English Edition) – The Story of a Round Trip
Oliver Brendel
Germany 2016, ebook 2019
Guillain-Barre syndrome
Patient Engagement: How Patient-provider Partnerships Transform Healthcare Organizations
Including chapter by Yann Le Cam, EURORDIS Chief Executive Officer, on ‘Expert by Experience: Valuing Patient Engagement in Healthcare’
2019
Wide Awake and Dreaming: A Memoir of Narcolepsy
Julie Flygare
USA, 2019
Narcolepsy
Chasing My Cure: A Doctor’s Race to Turn Hope Into Action
David Fajgenbaum
USA, 2019
Castleman disease
Our baby has sixty-five roses
Eilis Moroney
Ireland, 2019
Cystic fibrosis
Hei de Vencer: A história de José Léda
Hulda Rode
Brazil, 2019
Amyotrophic lateral sclerosis (ALS)
The Magical Life of Mauricio Saravia
María Eloísa Damele
2019
McCune-Albright
The Wish Sisters
Carol Zapata-Whelan
USA, 2019
Supporting a child with FOP: a practical guide to their learning journey
FOP Friends
UK, 2019
Fibrodysplasia ossificans progressiva (FOP)
Alles Liebe- Familienleben mit einem Gendefekt
Shari and André Dietz
Germany, 2019
Angelman syndrome
Rare Diseases
Özgür İnce, Merve Deniz Pak
Turkey, 2019
All rare Diseases
The voice of Behçet’s disease Patients
Merve Deniz Pak
Turkey, 2019
Behcet’s Disease
Mother is there
Karen Aiach
France, 2019
Sanfilippo type A
Come oro nelle crepe
Gioia Di Biagio
Italy, 2018
Ehlers-Danlos
The indigo stork / La Cigüeña Añil
Roberto Ferrero Gómez
Spain, 2018
All rare diseases
Chromosome Kids Like Me
Annette Fournier
USA, 2018
Chromosome abnormalities
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
El poder de una sonrisa
Mireia Monfort and Chica con Flequillo
Spain, 2016
Phelan McDermid 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
Mastocytosis
Le voleur de brosses à dents
Eglantine Eméyé
France, 2015
Autism, eplilepsy
Mauricio of Uruguay
Sean Hepburn Ferrer
Uruguay, 2014
McCune-Albright syndrome
A particular day
Anne-Dauphine Julliand
France, 2014
Metachromatic leukodystrophy (MLD)
Deux petits pas sur le sable mouillé
Anne-Dauphine Julliand
France, 2013
Metachromatic leukodystrophy (MLD)
Wonder
RJ Palacio
USA, 2012
Treacher Collins Syndrome