Huntington’s disease (HD) is a degenerative disease, it progressively deteriorates until reaching disability and complete dependence on a caregiver. The primary caregiver of a patient with HD requires training and support in this task. The caregiver needs education for the care of the sick by the family/caregiver, knowledge about the disease, form of transmission, management of symptoms, and knowledge about rights in the health and pension system. This article presents a digital educational platform (Cognoceme) for learning about managing household resources and care in the health system, which can be difficult for those suffering from rare diseases such as Huntington’s. Cognoceme, as a digital educational platform, can offer an accessible and effective solution to provide families with the knowledge and tools necessary to face the daily challenges of care. These platforms can play an essential role in training caregivers, optimizing the management of available resources, and promoting better integration of patients into the health system.

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Virtual Platform for the Accompaniment and Counseling of Careers of People with Huntington’s Disease

  • Liliana González-Palacio,
  • Mauricio González-Palacio,
  • John García-Giraldo,
  • Luz Stella Varela,
  • Alejandro Peña,
  • Joao Vidal Carvalho

摘要

Huntington’s disease (HD) is a degenerative disease, it progressively deteriorates until reaching disability and complete dependence on a caregiver. The primary caregiver of a patient with HD requires training and support in this task. The caregiver needs education for the care of the sick by the family/caregiver, knowledge about the disease, form of transmission, management of symptoms, and knowledge about rights in the health and pension system. This article presents a digital educational platform (Cognoceme) for learning about managing household resources and care in the health system, which can be difficult for those suffering from rare diseases such as Huntington’s. Cognoceme, as a digital educational platform, can offer an accessible and effective solution to provide families with the knowledge and tools necessary to face the daily challenges of care. These platforms can play an essential role in training caregivers, optimizing the management of available resources, and promoting better integration of patients into the health system.