Huntington and poverty as the Latin-American particularity
State of Researchs at the pressent moment
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)
Late-stage nursing home care Program
Late-stage nursing home care Program Program is focused on providing home visits for late-stage, bedridden patients, via a nursing team trained in HD care.
Telemedicine & Emergency assistance Program
Emergency program for families located in difficult to access locations. Includes telemedicine consultations with HDspecialists as well as provision for emergency transport to hospital centers if needed
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)
Phone app being developed to provide educational AV material for caregivers. Program includes initial visit to homesto ascertain level of need for caregivers.
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 semanas más difíciles para toda […]
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 several languages including Spanish and […]
A reflection based on a poem by Clint Smith
I Just listened to a TED radio podcast with poet and author Clint Smith, reflecting upon the current circumstances which evidence systemic oppression and violence against black Americans. We have all felt horror, frustration and fear in waves during the last few days. It is impossible for most of us, who did not grow up […]
