Basic assistance program

Basic assistance program

Delivering basic assistance such as food, soap, detergents, and disinfectants provides a life line for many families.
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…
What is Factor-H?

What is Factor-H?

A non-for-profit humanitarian project to increase the awareness of people living with and affected by Huntington’s disease, to facilitate social aid to diminish the suffering of local communities in Latin America. An effort to unite socially minded individuals through creative artistic, journalistic, medical, scientific, and political means to change the…
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…
In memory of our beloved Maria Fernanda Soto Santris

In memory of our beloved Maria Fernanda Soto Santris

The entire Factor-H team and families in the Abrazos Program mourn the passing of our beloved Maria Fernanda Soto Santris, 16, part of our HD community in Colombia. The second of three sisters, Maria Fernanda belonged to the Abrazos Program (at-risk for HD kids) for 4 years and had recently…
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…
Farewell our dear friend and collaborator Zoraida Soto

Farewell our dear friend and collaborator Zoraida Soto

Zoraida always received us with a child-like smile. She was the “mother” of the local San Luis association FAHUN (Fundación Amigos de Huntington), an association founded in 2017 by young people at risk for HD in Maracaibo. Zoraida acted as the Secretary of the organization, and she often brought a…