Fighting the Rare: a documentary on the importance of biomedical research to find treatments for rare diseases.

Fighting the Rare is a glimpse into research on Lafora disease, a rare neurodegenerative condition, through the testimonies of researchers, patients and their relatives.

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Rare diseases

Rare diseases are a diverse group of pathologies that have as their common denominator their low incidence: each one affects 5 or less out of every 10,000 people. Although the number of patients with each disease is low, together they represent a very large group. Many of these diseases are serious, chronic and disabling pathologies that very often go undiagnosed due to their complexity and ignorance of their existence. Once diagnosed, many patients do not have any treatment available or, if they do have one, it is not effective. Having efficient and safe treatments is an urgent goal of research on rare diseases.

 

-Between 6,000 and 8,000 rare diseases have been described, mostly genetic diseases

-Between 6% and 8% of the population has a rare disease

-300M people in the world have a rare disease 

Lafora disease

Lafora disease is a rare neurodegenerative condition that most commonly starts as epileptic seizures in adolescence that progress rapidly with a severe neurodegeneration. The extent of the disease is devastating. Although the child is born with Lafora, the disease typically does not manifest itself until adolescence. Children grow up normally, with no perceivable problems until they begin to suffer with seizures. That is one of the cruelest things about Lafora. A normal, beautiful and apparently healthy child who has everything to live for is faced with nothing more than a “death sentence”. Therapy is primarily palliative and aimed at reducing seizures. From manifestation, which is normally the first seizure, a Lafora patient will die typically within 10 years. Currently, there is no cure for this devastating disease.


More information: https://chelseashope.org/ 

The researchers of Figthing the Rare

Fighting the Rare has been done with the participation of international experts that have had a key role in the research on Lafora disease:

(in order of appearance)

www.drjordiduran.com

https://profiles.utsouthwestern.edu/profile/163575/berge-minassian.html

https://www.fjd.es/es/cuadro-medico/jose-maria-serratosa-fernandez#S_INVESTIGA_DOCENCIA

https://biochem.med.ufl.edu/profile/gentry-matt/

https://www.irbbarcelona.org/en/research/joan-j-guinovart

https://www.iqs.edu/en/dr-salvador-borros-gomez

https://cristinafornaguera.eu/

Meet the team of Figthing the Rare

This project was born from the collaboration between two brothers (Jaume and Jordi Duran) from completely different fields.

Jordi Duran: co-creator, screenwriter, interviewer and narrator voice.

Dr. Jordi Duran (www.drjordiduran.com) is a biomedical researcher that has devoted his investigations to the study of the brain and its alterations in conditions like Lafora disease. Over the past decade, Dr. Duran and team have helped resolve important issues in the pathology of the disease, paving the way for the design of future treatments. 

Jaume Duran: co-creator, film director and screenwriter.

Dr. Jaume Duran is a film professor at the University of Barcelona and collaborates in others centers (ESCAC-UB, ENTI-UB, LS-URL, CITM-UPC). He has made several cinematographic publications and directed several audiovisual productions.

César Valdivia: cameraman, sound engineering and editor.

César Valdivia is a freelance video editor who has edited shows and documentaries for TV channels like Netflix, TV3, TVE, Al Jazeera and Bein Sports, as well as corporate videos and shortfilms for video production studios.

Fighting the Rare

Figthing the Rare on the news

Apr 10, 2024. Barcelona

Fighting the Rare has been selected for the Love & Hope International Film Festival (L'HIFF) - September 2024


https://www.lhifilmfestival.com/selections-2024 

Jan 31, 2024. New York

Fighting the Rare finalist in the ONIROS Film Awards - December 2023


https://onirosfilmawards.com/December-2023.pdf  

Dec 16, 2023. Betevé

Betevé (Barcelona TV) broadcasts Fighting the Rare


https://beteve.cat/docs/lluitant-en-minoria/ 

Oct 6, 2023. New York

Fighting the Rare finalist in the Fourth edition of the New York City International Films Infest festival (NYCIFIF)


https://nycinfest.com/semi-finalists-2023/ 

Oct 3, 2023. Epilepsy Sparks

Hear of the ultra-rare, devastating, terminal epilepsy Lafora Disease and the exciting research taking place to try and improve and save the lives of the children affected. 


https://www.youtube.com/watch?v=M6-GW-VfVJo 

https://www.torierobinson.com/epilepsy-sparks-insights/jordi-duran-lafora-diesease  


Sep 28, 2023. The Disorder Channel 

Fighting the Rare is now also available at The Disorder Channel, which features documentaries and films about rare diseases.

The Disorder Channel is available via Roku or Amazon Fire TV. 


Jul 26, 2023. EURORDIS

EURORDIS shares the stories of Robin and Angelina, two patients of Lafora disease, and highlights Fighting the Rare 

Jul 20, 2023. Dementia Alliance International

Blog on Fighting the Rare and Lafora disease by Niki Markou Dementia Alliance International 


Jul 14, 2023. Barcelona / Sydney

Podcast on the challenges funding rare disease research, Lafora disease and Fighting the Rare VibeCast Ep 19 


Jul 9, 2023. La Cinemoteka

Jaume Duran has been interviewed to discuss  Fighting the Rare (in spanish) in La Cinemoteka (min. 65:05)


Jun 26, 2023. La Vanguardia

Fighting the Rare in the news La Vanguardia 

Jun 26, 2023. Barcelona

Fighting the Rare presentation at IQS Barcelona


Jun 21, 2023. Barcelona / Sydney

Interview by CheckRare. Dr. Jordi Duran and Niki Markou discuss the documentary Fighting the Rare and the symptoms and pathophysiology of Lafora disease.

1. checkrare.com/fighting-the-rare 

2. checkrare.com/lafora-disease-explained 

Mar 21, 2023. Barcelona

Recording and editing sound at ENTI-UB 

Jan 27, 2023. Barcelona

Shooting Fighting the Rare at IRB Barcelona 

Jan 18, 2023. Barcelona

Shooting Fighting the Rare at IQS Barcelona

 

Dec 5, 2022. Barcelona

Shooting Fighting the Rare at CCCB

"Brain(s)" exposition.  

Sep 22, 2022. San Diego

Shooting Fighting the Rare at the Lafora disease International Symposium.