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…
An evidence-based clinical consensus for Latin America

An evidence-based clinical consensus for Latin America

Objectives of the Clinical Practice Guidelines for the Management of Huntington’s Disease in Latin America In 2020, Factor-h obtained a grant from Roche for a project to generate an evidence-based clinical consensus for Latin America countries. The general objective of this consensus is to approach the health problems and improve 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…
Intersection: Huntington and poverty in the Latin-American clusters

Intersection: Huntington and poverty in the Latin-American clusters

Huntington’s disease (HD) is a genetic, fatal, and progressive neurodegenerative disease. HD does not discriminate based on ethnicity or gender. It advances slowly, but relentlessly. The disease is caused by mutations in a single gene, called Huntingtin, and the penetrance of the mutation is 100%.  If one is born with a Huntingtin mutation, today…
Program "Abrazos"

Program "Abrazos"

Program “Abrazos” is an ongoing program in Colombia since 2015 (currently 40 children), and also in Venezuela since 2019 (120 children). This program covers basic assistance – food, clothes, school supplies, medical access. Additionally, program covers recreational and educational events every 6 months (Christmas and summer holidays events and trips)…

Access to medicines & specialty care Program

Regular medical assistance program to ensure affiliated families get access to medications and visits by HDspecialists at a local clinic or at home
Caregivers Training Program (In person and App)

Caregivers Training Program (In person and App)

Factor-H has established formal collaborations with the University of Antioquia and the University of Medellín in Medellín (State of Antioquia), and the University Metropolitana (Barranquilla, State of Atlántico) to assist caregivers and the patients we directly support in Colombia (currently >130 families). Our employees work only in defined regions of…
Un resumen de los programas activos para el silenciamiento de la Huntingtina

Un resumen de los programas activos para el silenciamiento de la Huntingtina

El presidente de Factor-H expone su primera reacción y hace un primer análisis tras la noticia de la suspensión de los estudios de Fase III de Roche con Tominerse, y expone un resumen de los programas que siguen activos. Estimados amigas y amigos, esta semana ha sido una de las…
The Dancing at The Vatican Documentary

The Dancing at The Vatican Documentary

With over 20,000 views, Dancing at the Vatican documentary has been a success, and we hope this film has inspired people. We remember with fondness the trip to the Vatican and remain thankful for the words and warmth Pope Francis delivered to the HD community. The documentary is subtitled in…
A collection of short stories about HD affected individuals from Colombia

A collection of short stories about HD affected individuals from Colombia

A BOOK OF SHORT STORIES BY TATIANA HINOJOSA FROM VALLEDUPAR Tatiana Hinojosa is a well-known writer and teacher from Valledupar, Colombia. Tatiana went to grammar school with Leyla Mieles, an associate of Factor-H in Colombia, who introduced our mission to Tatiana, who quickly became aware of the need to increase…