Project: Evaluación e intervención psicosocial en enfermedades raras (Enfermedades raras)
Principal Investigator: Esther Lázaro
Main external stakeholder: Federación Española de Enfermedades Neuromusculares
Start date: 01/09/2015
End date: 05/09/2017
Interdisciplinary Platform/ Area: Health
Funding scheme: Basque Government 2012 (Aid for Research)
The project Neuro-e-motion focuses on the creation, development and validation of psychosocial assessment and intervention programmes for people affected by rare diseases and their families. They contributed with:
- The development of tools for evaluating the quality of life that can evaluate the effectiveness of intervention programmes validated with samples of people with rare diseases statewide.
- The generation of social support networks for people affected by rare diseases and their families.
- The direct effect on the population of patients and families through national and international dissemination (briefings, guidelines, articles in journals of impact and a book) on psychosocial aspects of rare diseases: guides aimed at people diagnosed, their families and caregivers.
- Dissemination of knowledge of the specific needs of this group and the creation of ad hoc programmes to improve the quality of life, access to resources and social support networks.
- Participation in the creation of European plans on rare diseases (EUROPLAN) and obtention of the 13th Award for Research Deusto-Bank Santander