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 earpieces, he headed for an […]

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

Little Schools Program ​(Escuelita) in Barranquitas, Venezuela

The current objective of this educational intervention is to standardize the learning of children at risk of HD not enrolled in school so that they can be inserted or reinserted into the official formal educational structure. We began this program in 2020 and following a short discontinuation due to the covid-19 pandemic, we continue this […]

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 targets the gene that causes […]

Program “Abrazos”

Program “Abrazos” is an ongoing program in Colombia since 2015 (40 children as of 2020), and also in Venezuela since 2019 (120 children as of 2020). This program covers basic assistance – food, clothes, school supplies, dental and medical access. Additionally, program covers recreational and educational events every 6 months (Christmas and summer holidays events […]