PresseinformationEN zur Veranstaltung INTERNATIONAL RARE DISEASE FILM FESTIVAL 2021

INTERNATIONAL RARE DISEASE FILM FESTIVAL 2021

Am 28. Februar 2021, dem weltweiten Rare Disease Day, präsentiert das RARE DISEASE FILMFESTIVAL die Jury-Auswahl der besten Filme aus 2.900 Einreichungen zum Thema Seltene Krankheiten im Rahmen eines virtuellen Events.

Mit dieser Initiative möchte die Firma CENTOGENE Menschen mit seltenen Krankheiten – das betrifft allein in Deutschland vier Millionen Mitbürger – eine künstlerische Plattform bieten, um ein öffentliches Bewusstsein und Verständnis für die ungewöhnlichen Lebensumstände zu schaffen.

Die Preisträger

Am 28. Februar 2021 wurden die Gewinner des diesjährigen RARE DISEASE FILM FESTIVALS präsentiert. Aus mehr als 2.900 Filmeinreichungen aus aller Welt kuratierten die Organisatoren des Festivals, Tom Neitzke und Isabelle Gustorff 52 Filme, aus denen die namhafte Jury die ersten drei Plätze ermittelte.
In der digital aufgezeichneten Preisverleihung waren die GewinnerInnen aus Spanien, Kanada, den USA, Indien und Italien zugeschaltet und erfuhren mit großer Freude und Begeisterung von ihren Preisen. Moderator Knut Elstermann gelang es im charmanten Gespräch die räumliche Distanz zu den Gewinnern vergessen zu machen, die Jury konnte mit herzlichen Worten die Preise an die Gewinner übermitteln.

Der erste Preis, der mit 16.000 € dotiert ist, ging an den spanischen Film ESTA NO ES UNA PERSONA des Regie-Duos Miguel Rodriguez und Pablo Ostarek. Der Film erzählt die Geschichte einer Frau, die an der Glasknochenkrankheit leidet, fokussiert dabei aber auf die innerfamiliäre Dynamik, die entsteht, als sie sich für ein selbstbestimmtes Leben entscheidet.

Jurymitglied Gunter Hanfgarn: Wenn ein Arzt dir sagt, dass dein Kind nicht lang zu leben hat, dann beeinflusst dies dein Familienleben nachhaltig. ESTA NO ES UNA PERSONA erzählt uns von Familiendynamik und den Beziehungen zwischen zwei Schwestern und ihrer Mutter, die nachhaltig von einer seltenen Krankheit beeinflusst sind.  

Szenenbild ESTA NO ES UNA PERSONA 

Der Zweite Preis, mit 9.000 € dotiert, ging  an den kanadischen Kurzfilm LUMEN von Sarah Seené. Dieser experimentelle Film der jungen Filmemacherin bekundet schon mit dem Titel Lumen die Absicht, sowohl das Schicksal eines blinden Albino-Mädchens künstlerisch adäquat in einem Film darzustellen als auch die Dimension des Lichts für die Gattung selbst zu thematisieren.

Juror Florian Weghorn: LUMEN ist künstlerisch herausragend. Der Film ist viel mehr als eine Kurzfilm-Dokumentation über einen Teenager, der an Albinismus leidet. Er spricht alle unsere Sinne an und zeigt uns dabei eine uns unbekannte Lebenswirklichkeit.

Szenenbild LUMEN

Der dritte Preis, mit 3.000 € dotiert, ging an FRASER AND ME von Kyle Ann Grandis, die ihre eigene Geschichte im Film erzählt. Sie wurde als weltweit 75. Patientin mit dem Gendefekt Fraser Syndrome diagnostiziert und begibt sich im Alter von 22 Jahren auf eine weite Reise, um weitere Menschen mit dieser seltenen Krankheit zu finden.

Juror Heino Deckert: FRASER AND ME erzählt von einer jungen Frau, die ein paar der wenigen Menschen trifft, die ihre Krankheit l, das Fraser Syndrome teilen. FRASER AND ME lädt uns zu einer ganz besonderen, liebevollen und freudigen Weltreise ein.


Szenenbild FRASER AND ME

In diesem Jahr hat die Jury zwei mit jeweils 1.000 € dotierte Spezial-Preise ausgelobt, die sich mit dem Thema COVID-19 befassen. Diese beiden Preise gingen an Pulkit Tomar für BASTAA, einen Film aus Indien und an den italienischen Beitrag BUONANOTTE/GOODNIGHT von Yohana Ambros.

Szenenbild BUONANOTTE/GOODNIGHT

Die Jury

Die Jury des International Rare Disease Film Festival setzt sich aus Produzenten, Regisseuren und Künstlern, sowie renommierten universitären Filmexperten zusammen.
Die Mitglieder der Jury 2021:
Heino Deckert (Produzent), Anna Grün (Produzentin), Gunter Hanfgarn (Produzent), Florian Weghorn (Programmleiter Berlinale Talents) und Dr. Susanne Winnacker (stellv. Intendantin Schauspielhaus Bochum). 

PrEISVERLEIHUNG 28.02.2021

Termin: 28. Februar 2021 – ab 16:00 Uhr

Form:
 Die Veranstaltung findet als Digitales Event statt.

Honorierung: drei Preise, die mit 16.000 €, 9.000 € und 3.000 € dotiert sind, sowie zwei mit je 1.000 € dotierte Spezialpreise für Kurzfilme zum Themenfeld COVID 19.

 

Moderation: Filmjournalist Knut Elstermann

Begrüßung:
Thomas Hailer, Leiter der Nordischen Filmtage Lübeck

Vorstellung des Programms: Tom Neitzke, Leiter des Rare Desease Film Festival

 

Die Gewinnerfilme werden im Anschluss auf einer Streamingplattform für den Zeitraum von vier Wochen zum Anschauen veröffentlicht. Der Link zur Plattform wird in Kürze bekannt gegeben. Der Abruf der Filme ist kostenfrei.  

Sie möchten Interviews mit den Jury-Mitgliedern, den Veranstaltern oder den Filemachern führen? Sie möchten über die Produktion der Veranstaltung berichten oder virtuell bei der Preisverleihung in der Presselounge teilnehmen? Bitte senden Sie uns Ihre Anfrage: 

Das FESTIVAL

DOKUMENTATION

Kurzfilm

Animation

Dem Aufruf zum RARE DISEASE FILMFESTIVAL 2021 folgte große internationale Resonanz: Filmemacher aus 120 Ländern haben vom 29. Februar 2020, dem letztjährigen Rare Disease Day, bis zum Ende der Einreichungen am 31. Oktober 2020 über 2900 Filme eingereicht. Die Kurzfilme zwischen zwei und 30 Minuten Spielzeit sind so unterschiedlich wie ihre Macher, mal erzählend, mal dokumentarisch, auch Animationsfilme und Experimental-Filme sind unter den Einreichungen.
Die Filme erzählen von Menschen, die seltene Krankheiten haben, von ihrem Alltag, ihren Familien, ihrer Arbeitswelt und ihren Freunden. Es sind Geschichten, von denen wir lernen können, wie Außergewöhnliches zur Normalität wird, wie es möglich ist, Problemen die Stirn zu bieten und sich die Freude am Leben zu bewahren. Geschichten, die für weltweit 350 Millionen Menschen mit seltenen Krankheiten stehen.

Die Filme stammen zum Teil von jungen Filmemachern, die in ihren Heimatländern schon erste Erfolge auf Filmfestivals feiern konnten. Dazu gehören u.a. Frédéric Schuld (Deutschland), Daria Binevskaya (Russland), Tony Ngige (Kenia), Owen Cant (UK) Tijs Torfs (Belgien), Hannah Wolny (Deutschland), Jared Jacobsen (USA), Sarah Seené (Kanada), Miguel Rodriguez, Pablo Ostarek (Spanien) und Pulkit Tomar (Indien). 

DIE FINALISTEN

Kurzinformationen über die Finalisten erhalten Sie durch Klick auf die einzelnen Bereiche:

FIGARO

#pgad# A young actress tries to show her talent on an audition, but always something stands in her way! Μια νεαρη ηθοποιος προσπαθει να δειξει το ταλεντο της στις οντισιον, αλλα παντα κατι την προλαβαινει!

COUNTRY: Greece

DIRECTOR: Dimitris Andjus

TIMOTHY SYNDROME ALLIANCE

Our mission: To support Timothy Syndrome & all other deleterious CACNA1C gene change families through education, shared experience & research. Creating awareness on all aspects of Timothy Syndrome among the general public, medical & research communities. Registered Charity no. 1185523

COUNTRY: United Kingdom

GO MAKE MEMORIES

“Go Make Memories”, is a short film which hopes to raise awareness of the ultra-rare and devastating group of genetic conditions, Niemann-Pick disease (NPD). The experiences of the individuals and families affected by NPD takes centre stage in this production, which has been developed by Director/Producer Carl Mason and NPUK Communications Officer John Lee Taggart, in direct collaboration with the lovely individuals and families our charity, NPUK, represents. By using a mixture of live action and animation the film explores the impact this rare condition has on those affected by it, by following the deterioration of the child and the subsequent emotional turmoil that comes hand in hand with such a diagnosis…especially when this is followed up with the suggestion by the family’s doctor to simply, “Go Make Memories”…

COUNTRY: United Kingdom

DIRECTOR: Carl Mason

MY DAUGHTER YOSHIKO

With her daughter Yoshiko diagnosed with Autism Spectrum Disorder, and her husband overseas serving in the military, Saki Omura is finding it harder and harder to cope. Too ashamed to burden others and too proud to ask for help, Saki faces the now-daunting task of giving her daughter the best life possible.

COUNTRY: United States

DIRECTOR: Brian Blum

CARLOTTA’S FACE

As a child, Carlotta didn’t expect the people around here to have faces. She even doesn’t recognize her own face. Years later, she learns about a rare, untreatable deficit of her brain. It was art, after all, that offered her a way to finally recognize herself.

COUNTRY: Germany

DIRECTORS: Valentin Riedl, Frédéric Schuld

BERTHA AND THE WOLFRAM

Meet Bertha, a 13 year old Belgian girl fighting every day against her ultimate enemy: Wolfram. Wolfram is a rare disease that affects her nervous system with major consequences on her eyesight. To fight Wolfram, Bertha has her own secret weapon: creativity. When she paints, it’s as if her brush becomes a sword that she carefully uses to create extraordinary paintings – and control Wolfram. Together with a renowned Belgian painter, they create inspiring paintings that they sell at the Eye Opener, a yearly fundraising art exhibition.

COUNTRY: Belgium

DIRECTOR: Tijs Torfs

BEYOND WORDS

Beyond Words follows the Ng family on their journey caring for their 13-year-old daughter Amelia, who has a rare degenerative condition. The film centers around the strong relationships that hold the family together, in particular Amelia’s bond with her older sister, Amanda. Amanda chose to be homeschooled to spend more time with Amelia, and also dedicates her time to advocating for those with special needs and their siblings.

COUNTRY: Singapore

DIRECTOR:Chang Hui Bin, Amanda

MY NAME IS PETYA

Announcement for publications Deep winter night mother with two small children get to the isolated box of infectious diseases hospital where the heroine is waited by a strange meeting which will change her life forever. SYNOPSIS At night, the heroine with her daughters fall into an isolated box infectious hospital. In the next room, behind the glass walls lives a little boy with Down -syndrome. At night he draws on the window of his room. By chance, mom gets acquainted with the hero, and together they create his most beautiful night “picture” on the glass. But early in the morning the boy disappears.

COUNTRY: Russian Federation

DIRECTOR: Daria Binevskaya

I TOO AM A LUCKY MAN – LIVING WITH PARKINSON’S DISEASE

My grandpa Rick is an educator, a family man, an avid hiker, a photographer, and one of my favorite people on the planet. He also has Parkinson’s disease. “I’m not Parkinson’s, but Parkinson’s is a part of me”. https://www.gracepattersonfilms.com/ Rick’s website: https://edtune.com/ Rick’s twitter: https://twitter.com/rickeducation

COUNTRY: United States

DIRECTOR: Grace Patterson

LEARNING TO WALK WITH THEODOR

In this film, Astrid Eldflug tells the touching story of her son Theodor. A 6-year-old boy walking in the garden – what seems to be normal for other kids at his age is a real miracle for Theodor. He is missing a part of Chromosome 5, which is called 5q14.3 deletion syndrome and nobody has ever thought he would be able to walk. During the first 2.5 years of his life he did not progress at all. He could not open his hands, could not grab toys, was unable to roll to his side, and could not hold his head. He hardly moved. But his mother has never given up her trust and hope in Theodor’s abilities. Thanks to her deep commitment and thanks to finding a special kind of movement-based therapy, Theodor has developed in miraculous ways. He took his first steps in 2019 and is surprising his mother day after day. This film beautifully documents how a severely challenged child can progress far beyond his limitations. It pushes the borders of medical prognoses and shows how the impossible becomes possible if there is someone who trusts in the child’s abilities. This film is a unique documentary presenting the child’s development from birth to his first steps, building awareness not to take normal development for granted. It is a film full of hope, love and inspiration.

COUNTRY: Austria

DIRECTOR: Astrid Eldflug

PARTY

Giro, a college student suffering from 465 syndrome (a hypothetical disease), finds out from her friend Yoo Young. Yoo Young, , vice chairman of the 465 patient support group, will take more relief later. Giro don’t like that . * When patients reach the REM sleep stage, a disease that causes fever and fires in certain areas, resulting in “human nature ignition” and death. Many patients hide the fact that they are considered dangerous.

COUNTRY: Korea, Republic of

BUONANOTTE/GOODNIGHT

Milan under Covid-19 lockdown: a day in the life of a homeless video maker

COUNTRY: Italy

DIRECTOR: Yohana Ambros

HEROES OF MATHARE

In Mathare, the second largest slum in Kenya’s capital city of Nairobi and one of the largest slums in Africa, the biggest defenses aganist the spread of COVID-19-social distancing and frequent hand washing-are nearly impossible. Families cluster in 10-foot-by-10-foot shacks, and residents share one toilet with 50 to 150 people. Water and sanitization is scarce. Directed & Edited by Tony De Gigz Shot by Karanja Mathu Produced by Folklore LtdStarring Wyban Kanyi Fixer Leon Sumbua(SLUMBOY) Photographer Kongo Peter

COUNTRY: Kenya

DIRECTOR: Tony Ngige

DUSTIN CLARK: THE HUMANITY IN WHO WE ARE

Dustin Clark is a musician, an artist, and a man who sees challenges as possibilities. Diagnosed with Muscular Dystrophy at the age of 10, he is in a constant state of reinventing how he approaches each creative endeavor. When it comes to music, his current process involves the tediously clicking in notes on his computer, a guitar suspended from the ceiling, and help from friends and family. Dustin briefly chronicles his history with Muscular Dystrophy, what has inspired him to keep creating, his current musical process and his hopeful view of the future.

COUNTRY: United States

MIKE’S WORDS

A man with a rare physical disability makes films that focus on the social aspects of being a minority.

COUNTRY: United States

DIRECTOR: Jared Jacobsen

BEATRIZ

Ruído and Project “Saúde Solidária” present: “Beatriz”. Every year, a team of doctors, dentists and volunteers from different parts of Brazil gather for a trip of approximately 24 hours from the city of Belém to Ilha de Iracema located in a riverside area in the Amazon on the banks of the Pacajá River in Pará. For 3 days the group serves families from riverside communities without access to health posts and hospitals. This is the story of Beatriz.

COUNTRY: Brazil

DIRECTORS: Diego Imai, Ricardo d’Avila

IRON BROTHERS

the film tell us a story of uncondicional love between 2 brothers. Miguel is a 33 year old Lawyer and triathlete and he wants to help his brother Pedro 31 year old, who suffers from cerebral palsy , to get the attention needed for people with disabilities. Pedro has the dream of putting the spotlight on this community and help his other coleagues achieving their goals. He deffies his brother to do the triathlon together, that seems impossible but after some thought they form the triathlete duo , the IronBrothers and they are going to participate at the tough Iron Man Cascais, in order to gain some money and attention to help the APCL ( Portuguese Association of Cerebral Palsy.

COUNTRY: Portugal

DIRECTOR: Nuno Cibrao

SURVIVING NOMA

Noma is a gangrenous infection starting in the mouth caused by extreme poverty, malnutrition and poor hygiene. In just two weeks, it destroys the tissues of the face and might kill up to 90 percent of the people affected. The World Health Organization estimates it affects 140,000 people every year. At the Noma Hospital in Sokoto, Nigeria, disfigured survivors find a unique place to heal their wounds. While they suffer from pain and discrimination, they are on a life-changing journey to overcome years of isolation.

COUNTRY: France

DIRECTORS: Claire Jeantet, Fabrice Catérini

PAMPELIŠKA

My grandfather has alzheimer’s, my grandmother loses her memory because of old age. This film is the accompanying and reflection of the mental fog that settles on them. Far from being a scientific explanation, this short documentary is an experience, an immersion in the dynamics of consciousness and identity being consumed by time, illness and age. The memory arrives to not stay.

COUNTRY: France

DIRECTOR: Allan Laurent Colin

IN THE GLASS HOUSE

What does your inner world look like? What rooms do you flee to when the outside world is unbearable? How does this world smell? Does it smell like traces of human scent? How do you connect your inner world with the outer world? A documentary not only about those who ask themselves these questions every day. A film not only about autism spectrum disorder or Asperger’s syndrome, but about all of us. Every human being has autistic traits. Everyone has their inner world, their perception, their glass house.

COUNTRY: Germany

DIRECTOR: Anna Zhukovets

A COMPLETE LIFE…

A point of view short film about an adopted young Indian Boy named Jay who suffers from Cystic Fibrosis. After the doctors ask him to rest in his final days limiting his physical activity; his family and friends encourage him to undergo surgery in order to clear his lungs and potentially extend his life… However, Jay decides to spend his last days not in a hospital bed but living his life in completeness.

COUNTRY: Australia

DIRECTOR: Kush Gupta

WALK IN MY SHOES

This fill tells the story of the life of a Cystinosis patient through the eyes of the patient, family and friends in the community. It not only speaks to the Cystinosis community but the entire rare disease community. It is a film about hope, perseverance and the desire to have a positive quality of life. Chandler Moore is 14/15 years old and lives with the disease is a small town in rural Delaware with his parents, Clint and Annie. He is the only person in his state with the disease. Throughout the film we see the Clint (Father) transition from scared and denial to the power that drives this family to fight this disease.

COUNTRY: United States

DIRECTOR: Richard Hemmingway

FIGHTING MSA AUSTIN CRAWFORD’S STORY

Diagnosed with a terminal neurological disease that is so rare there’s no treatment or cure. This informative and heartwarming documentary is filled with emotion from beginning to end. Follow the journey of how Austin Crawford learns that hope still exists.

COUNTRY: United States

DIRECTOR: Phil Gioja

A STORY OF COURAGE

Ariana Feiner shares her story with her rare metabolic condition, Hypoparathyroidism. She spreads her message of hope through her work with her children’s book for kids with chronic health conditions, Ariana Rose: A Story of Courage. Ariana exemplifies that it is not our obstacles that define us; it’s the way we face them.

COUNTRY: United States

DIRECTOR: Ariana Feiner

HOW TO DESCRIBE THE SIZE OF A PLANE?

Przemek takes on his first-and-final bicycle trip. Due to a rare genetic disease he is gradually loosing his eyesight, and will be blind in a few years. Coming to terms with his inevitable future turns out to be tougher than the hardship of his challenge. While this adventure and the people he meets along the way enrich him, he finds no relief to his great loneliness. Soon he will be again trapped at home, with nothing more than an exercise bike, recalling memories of his achievement.

COUNTRY: Poland

DIRECTOR: Szymon Jan Sinoff

The Kids Are Still Here

The Kids Are Still Here is a documentary short film about communities in Northern Uganda affected by nodding syndrome – a rare and deadly disease that’s been infecting children since the 1960s.

COUNTRY: United States

DIRECTOR: Christopher Ninness

Los días que pasan

Los días que pasan narra la historia del confinamiento a través de la mirada de Leo, un niño de 4 años que cada día hace las mismas cosas junto a su hermanita Olivia. El cortometraje narra con técnica de documental las distintas situaciones aparentemente sencillas, pero muy complejas en el fondo a causa de la crisis sanitaria del Coronavirus. La narrativa es guiada por la voz del niño, intentando intervenir en lo mínimo para poder sostener el relato desde su mirada. La situación de Leo es igual a la de millones de personas confinadas actualmente en España y en gran parte del mundo a través de la cual se pueden identificar.

COUNTRY: Spain

DIRECTOR: Antonio Savinelli

NAM

‘Nam’ tells the story of Adam, a young man being treated in the Bruckner family home for his inability to either speak or comprehend language. The film offers a portrait of family life in the 1950s and examines how its members orient themselves around a man’s languageless condition.

COUNTRY: United States

DIRECTOR: Niccolò Corti

This is not a person

Elisenda is a woman with a rare disease called osteogenesis imperfecta who has always led a very protected life. Now she is trying to find her own way even if it means leaving everything she knew behind.

COUNTRY: Spain

DIRECTORS: Miguel Rodriguez, Pablo Ostarek

Accelerate

A runner is unable to pursue his passion for speed because of a rare heart disease and struggles to either accept or fight his disability.

COUNTRY: Netherlands

DIRECTOR: Joshua van ’t Hoff

An unspected journey

In our world, in the West, the arrival of a child is good news. Joy, illusion, future plans. But?. What happens when the child who arrives is not what we thought? What happens when it is not the perfect and healthy baby we expected?What happens if the baby is sick?

COUNTRY: Spain

DIRECTOR: Maria Guerra

Oxygen

Marta soon told her boyfriend what was happening to her. He has a degenerative and incurable disease that requires a lot of treatment time in physical exercises and drugs. It conditions her life in all aspects: work, personal, social. How can you live with that burden? Can you be happy?

COUNTRY: Spain

DIRECTOR: Luis Murillo Arias

I still can’t make it

At the age of 21, I was diagnosed with a chronic autoimmune disease. Today, 8 years later, I still cannot regularly take the medication I need to live.

COUNTRY: Argentina

DIRECTOR: Elena Bursztein

Come negli occhi di un bambino

COUNTRY: Italy

DIRECTOR: Benedetto Orestini

Pain: Stories of fibromyalgia

A dogma95 style serial documentary that tries to capture the daily struggle of several fibromyalgia patients as realistically as possible.

COUNTRY: Portugal

DIRECTORS: João Ribeiro, Mauro Soares, Débora Andrade, Simão Pereira, Diogo Romão, Alicia Chinita, Leonardo Silva

PH1 of a Kind

PH1 of a Kind is a 4-part video series starring Isabelle, Luuk, Asha, and Will — kids from around the world who have been diagnosed with primary hyperoxaluria type 1 (PH1). Having this rare genetic disease means that some of their daily experiences are different from that of other kids, but PH1 doesn’t define them — they’re special because of who they are. Each video explores a different aspect of living with PH1 including how it impacts the body, feelings of isolation and the ability to talk about their condition with their peers. PH1 of a Kind was developed in partnership with the Oxalosis and Hyperoxaluria Foundation (OHF) for school-age children based on the insight that there was no child-frendly information/content available on this condition. PH1 is an ultra-rare genetic liver disease that typically presents in childhood and which causes severe damage to the kidneys and other organs and ultimately leads to the need for dialysis and a dual liver/kidney transplant. Please note that we have a version of this film with German subtitles if that is desired. *The characters featured in PH1 of a Kind are fictional however they are based on composites of many different children with PH1. Any resemblance to actual people is purely coincidental.

COUNTRY: United States

DIRECTOR: Seth Levine

CoVID Antidote

A super short film about the COVID pandemic and the measures to be taken by people who want to survive it.

COUNTRY: Russian Federation

DIRECTOR: MARAT VALERIEVICH NARIMANOV

Lighthunger

Lighthunger. A typical symptom of patients, who suffer from Lebersche kongenitaler Amaurose, LCA for short. They are born with eyesight, but bit by bit they will lose it. Laika has LCA. Today she lives alone, came to terms with the situation and wants to stay inconspicuous. Yet nobody knows her dark past. Nobody has seen her hidden strength. Nobody knows, that she only seeks one thing: revenge. All earnings with the film and the DVD will be donated with no exception to the PRO RETINA Deutschland e.V. foundation.. PRO RETINA supports people with visual impairment.

COUNTRY: Germany

DIRECTOR: Lukas Kellner

Guilt with rare disease – genetic transmission: am I responsible?

Ewenlife has been producing series on the daily lives of people affected by rare diseases for 2 years. One about resililence with rare disease (2018) and the other one about guilt with rare disease (2019). In 2020, we want to realize 2 web series : one about pain with rare disease, and the other one about the relationship between medical world and patient world in case of rare disease Today we want to introduce you episode 2 of our season 3, dedicated to guilt with rare disease. With a focus on a very specific subject to rare disease: the guilt due to genetic transmission. https://app.ewenlife.org/app/video/1480

COUNTRY: France

DIRECTORS: Alan Castejon, Philippe Larrouy

WAKE UP

This movie shows what is going on everywhere with corona virus. How it started and how it affected our lives. “WAKE UP” teaching us to appreciate the simple things we see daily in our lives and ignoring them. The film was shot in Servia. A historic town in the prefecture of Kozani.

COUNTRY: Greece

DIRECTOR: Apostolis Pavlos

Spacious

My animated documentary short film „Spacious“ deals with “Aphantasia“, a condition that prevents people from being able to visualise imagery. The story was created based on a survey conducted amongst people living with Aphantasia and aims to provide an insight into this unique way of perceiving the world. 

What does it look like to not have a visual imagination? To bring across the feeling of an inner world without images, my film makes use of the depth created by a black screen. This is combined with digital 2D images whose fleetingness aims to mirror the surreal being of mental imagery. The visual world is accompanied by a narrator who leads the audience through a life with Aphantasia. This results in an interplay between what is seen, what is heard and the audience’s imagination.

 My film „Spacious“ hopes to give voice to a different way of experiencing the world. How do others visualise? And how do I even visualise? Questions that are meant to accompany the audience after viewing my film and that encourage a new perspective on one’s surrounding, as well as oneself. 


COUNTRY: Germany

DIRECTOR: Pauline Muszi

We can make it!

Life with GSD I (Gierke) presented by families who have to deal with their children and young people who are affected themselves. Physicians and psychologists give advice and recommandations. The most important aims are the Information and encouragement.

COUNTRY: Germany

DIRECTOR: Philipp Reichelt

Bastaa

Bastaa is a garhwali short film based on migrant labour crisis during the COVID-19 pandemic in India. Abhay a young boy with big aspirations and dreams has to give up on everything because of the hardship that followed due to the lockdown.

COUNTRY: India

DIRECTOR: Pulkit Tomar

Menkes Disease: Finding Help & Hope

Academy Award nominee 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.

COUNTRY: United States

DIRECTOR: Daniel DeFabio

Good Days, Bad Days, Rare Days

11 families discuss their struggles with 8 different rare diseases.

COUNTRY: United States

DIRECTOR: Daniel DeFabio

One In 50 MIllion

Nawaal Akram is a fairy on wheels, a witty wise water sprite made to live in the desert. Diagnosed with Duchenne Muscular Distrophy, a rare chromosomal mutation in women ( only one in 50 million), she uses fashion, make-up, and stand-up comedy as a platform for her activism. Her gradually debilitating health does not seem to affect her energy and zest for life, but her body has already started to fail her. At 19, she’s conscious of her imminent destiny and lives more intensely than ever.

COUNTRY: Qatar

DIRECTOR: Luciana Ceccatto Farah

so quiet so loud

The film „so quiet so loud“ follows the 4 year old Maja in her everyday life. Next to her playing, drawing and crawling all day long, she also must visit the hospital and join learning enhancement activities, because she suffers from cancer and has a special form of trisomy 19. In order to get to know the person beyond their diagnosis, the film does not focus on her physical features but is dedicated to the smaller moments of her life. The observing style of the film gives an intimate inside view of the life of a family and shows how love, comprehension and patience can shape a child’s life.

COUNTRY: Germany

DIRECTOR: Hannah Wolny

Rare Frequencies

Rare Frequencies is a film which draws upon conversations with people impacted by rare health conditions, recorded with members of the public, patients and practitioners involved in genomic medicine. Exploring the definition and frequency of rare conditions, the discussions are combined with footage filmed at a nature reserve in Manchester, UK, where native mossland plants have been reintroduced to restore and protect a rare peatbog habitat. With an original and evocative soundtrack score, the documentary connects together themes of environmental, social and personal healthcare, in the context of lived experience, shared similarities and natural ecologies.

COUNTRY: United Kingdom

DIRECTOR: Nick Jordan

Lockdown Paris

March 17th 2020 Paris goes into lockdown. The global pandemic washes over Europe for months. This is a story about life in lockdown, unnervingly calm, strangely poetic and deadly quiet.

COUNTRY: France

DIRECTOR: Astrid E. Mork-Knutsen

S. SANKARA RAMAN – The Man, The Myth, The Legend

A look into the life of social worker affected by Muscular Dystrophy, Shri S. Sankara Raman. A man who is one of the pioneers in creating a cross-disability movement in India, encouraging people with different disabilities to work on common and collective solutions.

COUNTRY: India

DIRECTOR: Arin Paul

Lumen

Lumen (meaning light in Latin) is a sensorial film shot in Super 8 that paints a portrait of an adolescent with albinism. The hypersensitivity that this genetic condition engenders and the lack of pigmentation in her skin and eyes lend her an extraordinary aura. This film echoes a series of photographs entitled Fovea, which takes as its subject visually impaired young people.

COUNTRY: Canada

DIRECTOR: Sarah Seené

One in a million

‘One in a million’ is the inspirational story of Anya and her parents, as they try to create happy memories in the face of Anya’s relentless and utra-rare neurological condition. This short documentary film, from Owen Cant and Cosmic Joke, explores the traumatic period of diagnosis and subsequent ways in which a family must adapt to an unpredictable disease which has very little research and as yet no cure.

DIRECTOR: Owen Cant

Cha (lle) nges

It is estimated that one in a thousand people is born with Chiari Malformation. Most of them are diagnosed after years of symptoms and misdiagnoses. Like me. This is a fragment of the month between the bittersweet feeling of having an answer after years of suffering uncertainty and my brain surgery, during quarantine.

COUNTRY: Argentina

DIRECTOR: Pilar Ferrero

Fraser Syndrome & Me

Filmmaker Kyle Anne Grendys, is only the 75th person to be born with the rare, recessive gene disorder called Fraser Syndrome. Having always felt alone in the world, she sets out on a journey to find her community and finally meets others just like her.

COUNTRY: United States

SCREENING ROOM

Zur Sichtung der Finalisten-Filme kontaktieren Sie bitte Ansprechpartnerin Jutta Heyn unter der Mailadresse jutta.heyn@lilie2a-pr.de.  

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Über den Rare DISEASE DAY

Jedes Jahr im Februar nutzt CENTOGENE den Anlass des Internationalen Rare Disease Days, die Sichtbarkeit Seltener Erkrankungen zu verbessern. Der Rare Disease Day ist eine besondere Gelegenheit, Menschen zusammen zu bringen, Bewusstsein zu schärfen und sich für eine schnelle Diagnose und einen einfacheren Zugang zu Therapien für alle, die von Seltenen Erkrankungen betroffen sind, einzusetzen.

CENTOGENEs Rare Disease Day 2021 (www.RDD2021.eu) hat das übergeordnete Ziel, die Sensibilisierung von politischen Entscheidungsträgern, Behörden, Forschern, Angehörigen der Gesundheitsberufe und der breiten Öffentlichkeit zu bewirken. Der diesjährige Tag der Seltenen Erkrankungen beleuchtet die Folgen der COVID-19 Pandemie für die Patienten von CENTOGENE, sowie Nutzen und Potenziale von internationalen Diagnostik- und Forschungskooperationen für Patienten in der ganzen Welt.

Links und Hashtags

#RareDiseaseDay
#RDD

#RDD2021
#RDFF2021