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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…
Article by Factor-H at the Huntington Study Group Insights magazine

Article by Factor-H at the Huntington Study Group Insights magazine

The Huntington Study Group (HSG) is a USA-based non-profit organization dedicated to the development of therapies for HD, largely by promoting professional education and conducting clinical trials for HD. The Insights magazine is HSG journal where updates and special features are communicated, in all areas of relevance to the mission…
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…
Factor-H Reaches Out to Huntington’s Neglected Families of South America

Factor-H Reaches Out to Huntington’s Neglected Families of South America

  See this article written about Factor-H, from Hawken Miller, a young journalist who focuses on rare disorders. see his other articles about HD here Thank you!
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…
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