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 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…

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…

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…

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…

  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!

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…

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…

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,…

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)…