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

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

It was with the pomp and intrigue of a Dan Brown novel that earlier this month Pope Francis made his way into the Aula Paolo VI audience hall, a room the size of an aeroplane hangar in Vatican City. Flanked by the flamboyant Swiss Guard and dark-suited men muttering into…

El papa consuela a enfermos de Huntington

El papa francisco recibió en una audiencia especial a unos quinientos enfermos de Huntington acompañados de sus familias y benefactores. Según especialistas, esta enfermedad que no tiene cura tiene mayor incidencia en América Latina. Por Natalia Mendoza, CNN Español Publicado a las 15:45 ET (19:45 GMT) 23 mayo, 2017 VER NOTICIA
Support communities involved in disease studies

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. By Ignacio Muñoz-Sanjuan 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…
El Papa recibió a la chica argentina que sufre una rara enfermedad mortal

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

El Papa consoló a cientos de enfermos del mal de Huntington, una enfermedad genética mortal difundida sobre todo en la América Latina, animándolos a “no sentirse una carga” y lamentando el “aislamiento y abandono” que sufren. Entre ellos se encontraba Brenda, una adolescente argentina de 15 años y el cantante…
Nacho speaks about Factor-H at HSG conference 2020 - Insights of the Year

Nacho speaks about Factor-H at HSG conference 2020 - Insights of the Year

On November 30th, Nacho spoke about the mission, vision, and goals of Factor-H at the 2020 conference of the Huntington Study Group (HSG), a well-known and leading clinical research organization. Nacho spoke as the Insights of the Year speaker. The conference is about 35’ long and contains some videos, followed…
Claudia Perandones: la investigadora que no tenía ni para los libros y hoy apuesta a vencer al coronavirus

Claudia Perandones: la investigadora que no tenía ni para los libros y hoy apuesta a vencer al coronavirus

Con mucho esfuerzo personal y familiar, se recibió de médica con diploma de honor, hizo una gran carrera como genetista y coordina los equipos del ANLIS Malbrán responsables de los testeos y de decodificar el genoma del virus. La causa del Huntington, el Papa y los amigos de Hollywood. Adriana…
El Papa recibe a 200 enfermos de Huntington para acabar con el estigma de esa enfermedad

El Papa recibe a 200 enfermos de Huntington para acabar con el estigma de esa enfermedad

Recordando que «Jesús salía al encuentro de los enfermos y derribaba los muros del estigma y la marginación», el Papa Francisco ha mantenido el jueves un encuentro con doscientos enfermos de Huntington, acompañados de sus familias, investigadores y benefactores hasta un total de casi dos mil personas a las que…
Hunting for help in South America

Hunting for help in South America

With potential treatments for Huntington’s disease on the horizon, long-moot questions of responsibility towards Latin American communities are being felt acutely. But will the people who contributed to landmark research ever reap its benefi ts? Dara Mohammadi investigates By: Dara Mohammadi It’s dusk in a housing project on the outskirts…
New article about Colombia and Factor-H in the Lancet Neurology

New article about Colombia and Factor-H in the Lancet Neurology

Dara Mohammadi just wrote a final piece from the trip we took together to Colombia in April 2016. You can find the pdf of the article here: HD Colombia Lancet Also read about Enroll-HD efforts here: http://www.enroll-hd.org/ Please note that even though efforts to initiate Enroll-HD are underway in Colombia,…
Article by Monica Roa - a lawyer working with Factor-H to protect the rights of the patients in Colombia

Article by Monica Roa - a lawyer working with Factor-H to protect the rights of the patients in Colombia

A couple of months ago, I met Monica Roa in Washington DC to discus whether we could team up to deal with the issues facing many of the Colombian families – the lack of institutional and government support, the refusal by many of the insurance companies (called EPS in Colombia)…