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

Visit to San Luis and Barranquitas in December 2018

video narrated by Nacho, produced by Gindel Delgado

Factor-H works to increase awareness of the dire situation of these two communities in Zulia State in Venezuela, home to the largest number of Huntington's patients in the world.


December 2018 visit to Venezuela - video narrated in Spanish by Gindel Delgado.

Visitamos este Diciembre 2018 las comunidades más grandes del mundo afectadas por la enfermedad de Huntington. Este es un video en español describiendo su situación. Créditos a nuestro amigo Gindel Delgado. Instagram: gin.delgado

factor-h in the PRESS

EHDN Newsletter article about Factor-H work in Venezuela - pages 8-9

Read it

Clinical Neurology News article about Factor-H First Latin American Conference, held in Barranquilla, Colombia (2018), by Jennie Smith

Read it

The Nature commentary (Nature: 531, Page 10, March 2016) 
Read It... 

The Guardian/The Observer article by Dara Mohammadi, May 15, 2016
Read it...

The Lancet Neurology article (The Lancet, Volume 12, Issue 2, February 2013, Pages 133–134)
Read It...

The legal commentary from Monica Roa. Ambito Juridico, July 2016 (in Spanish)
Read It...

Dara Mohammadi’s article including Factor-H work in Colombia at the Lancet Neurology, July 2016: 
Read It...

Adrian Burton article about Factor-H, The Lancet Neurology, February 2013:

Read It...


Factor-H co-organized the recent Papal audience in solidarity with Latin America

Ignacio and Claudia lead the HDdennomore campaign to end stigma for HD

LINK - Pope Francis' 18-May 2017 speech to HD families translated into English and Spanish

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

Brain Pope Francis champions Huntington’s disease

Stat News Families bear the burden of this disease in silence. Pope Francis made us into a community

Noticias - audiencia con el Papa Francisco

CNNe El Papa Consuela a enfermos de Huntington

ABC El papa Francisco recibió a unos 500 enfermos de Huntington

El Pais Qué es el Huntington, la enfermedad que preocupa al papa Francisco

Nuevo Diario Un médico y su paciente, en Roma con el papa Francisco

Terra El Papa Francisco en audiencia con los enfermos de Huntington

Clarin Axel cantó por primera vez en el Vaticano ante el Papa Francisco

Clarin El Papa recibió a la chica argentina que sufre una rara enfermedad mortal

Segundo Enfoque Francisco se reunió con la argentina que sufre una enfermedad mortal

Rome Reports El Papa abraza uno por uno a mas de 100 enfermos que sufren la enfermedad de Huntington


prensa en español, conferencia en Barranquilla, julio 2018

Noticias sobre la primera reunión Latinoamericana de Huntington, Barranquilla Julio 2018

ADN Barranquilla article article describing participation of the Atlántico province governor at the event

Diario La Libertad article about the conference

Oculta Nunca Más, blog by Eduardo León


LINKS to other HD organizations

International HD Patient Association –

Huntington’s Disease Society of America –

HDBuzz –

HD Youth –



Video of the Papal Audience, May 18 2017

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.


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.