Nacho was interviewed by Brian Moore of HDdennomore in Rome when we visited Pope Francis, and explains the origins of Factor-H


PRESS

The Nature commentary (Nature: 531, Page 10, March 2016) 
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The Guardian/The Observer article by Dara Mohammadi, May 15, 2016
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The Lancet Neurology article (The Lancet, Volume 12, Issue 2, February 2013, Pages 133–134)
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The legal commentary from Monica Roa. Ambito Juridico, July 2016 (in Spanish)
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Dara Mohammadi’s article including Factor-H work in Colombia at the Lancet Neurology, July 2016: 
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Adrian Burton article about Factor-H, The Lancet Neurology, February 2013:

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Factor-H co-organized the recent Papal audience in solidarity with Latin American patients
Ignacio and Claudia lead the HDdennomore campaign to end stigma for HD
 

links - coverage of the Pope audience in the Vatican on May 18, 2017

The Guardian Huntington’s disease: the pope steps in to help raise awareness

PBS Newshour ‘Hide no more,’ Pope Francis tells those with Huntington’s disease

Catholic Herald Pope Francis: ‘No Ends…Can Justify the Destruction of Human Embryos’

Catholic News Agency Pope’s historic meeting with Huntington’s patients offered ray of hope

Catholic Herald Pope Francis’s words of compassion for Huntington’s sufferers have been a long time coming

Catholic News Agency Pope Francis to Huntington's patients: You deserve respect and love

 

Video of the Papal Audience, May 18 2017

Audience of Pope Francis with people suffering from Huntington's disease, a degenerative pathology, and their families from South America and other countries, from Paul VI Audience Hall, Vatican City.

Local news program highlighting Factor-H work in the December 2016 medical brigade in El Dificil, Colombia

Support communities involved in disease studies

Lack of continued help for poor families involved in Huntington’s-disease research has sown resentment and mistrust, says Ignacio Muñoz-Sanjuan 08 March 2016 - © 2017 Macmillan Publishers Limited, part of Springer Nature. All Rights Reserved.

After decades of research, a genetic therapy for Huntington’s disease is being tested in clinical trials. Sponsored by Swiss pharmaceutical firm Roche and US-based Ionis Pharmaceuticals, this trial targets the gene that causes the disease. If the new treatment works, it could offer a way to halt progression of this genetic disease — an awful neurodegenerative disorder that attacks mainly the brain. Huntington’s is caused by a single gene mutation transmitted in a dominant fashion, so a child has a 50% chance of inheriting the condition if one of their parents carries a single copy of the defective gene.

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Huntington’s disease: the new gene therapy that sufferers cannot afford

Efforts to treat Huntington’s disease involve costly drugs way beyond the reach of the poor communities in South America who take part in research studies. Dara Mohammadi Sunday 15 May 2016 -  © 2017 Guardian News and Media Limited or its affiliated companies. All rights reserved.
 Ferdinand, 42, lost his job last year. His father having died early, neither Ferdinand or his wife knew the disease was in the family. Photograph: Nick Garcia for the Observer.

 Ferdinand, 42, lost his job last year. His father having died early, neither Ferdinand or his wife knew the disease was in the family. Photograph: Nick Garcia for the Observer.

As the small motorboat chugs to a halt, three travellers, wind-beaten from the three-hour journey along the Atrato river, step on to the muddy banks of Bellavista, an otherwise inaccessible town in the heart of the heavily forested north-west of Colombia. They swing their hessian bags – stuffed with bedsheets, dried beans and cuddly toys – to their shoulders and clamber up a dusty path. Tucked inside the bag of one of the travellers, neuropsychologist Sonia Moreno, is the reason they are here: a wad of unfinished, hand-drawn charts of family trees.

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