Factor-H aims to provide adequate and holistic health assistance to all families affected by HD in our communities. Assistance takes place through contracts with specialized clinicians, by providing needed medications, and through regular community-centered medical days to provide specialized and general medicine support for the communities.
By working closely with leading HD experts in the countries we work in, we bring much needed support for impoverished families, who often live away from specialized medical centers. We work in close collaboration with local universities to facilitate assistance.
Factor-H works with leading HD specialists in Latin America and have implemented various strategies to assist the families and patients we work with. Many of the families live in isolated rural settings where access to specialized care is very challenging. Whenever we can, we organize medical ‘days’ to bring physicians and other specialists to them. In Maracaibo, Venezuela, Factor-H provides regular psychiatric care for San Luis. In Colombia, Factor-H works closely with the Neuroscience group at the University of Antioquia in Medellin, and with University Metropolitana in Barranquilla. We hope to expand our medical program through partnerships with local hospitals and medical schools, and to hire more professionals to ensure continued care, including home-care programs for late-stage patients.
The caregiver program aims to provide support for caregivers, old and young, who must care 24/7 for people affected with HD, often times with little knowledge about the disease. Towards this goal, Factor-h and affiliated institutions provide on-site training and assistance via a newly designed phone and computer app called ‘Cognoceme’.
See a video describing the app HERE
The LA PEP program aims to train local health professionals in the communities to enhance patient care. Selected applicants will travel to HD centers of excellence in Spain and in other South american HD centers for training (1- or 3-month duration). The program also aims to send HD specialists to the communities, to facilitate the training of local professionals and families. This program is also tied with sponsoring neurology, psychiatry and psychology residence programs at local universities – for example, ensuring support so that residents access patients from the affected communities.
The medical emergency program is designed to better assist families located in difficult to access locations, and in the context of emergencies, which have been common during the covid pandemic. The program includes telemedicine consultations with HD specialists as well as provision for emergency transport to hospital centers when needed.
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