Projects: Evaluación e intervención psicosocial en enfermedades raras (Enfermedades raras)
Name of the principal Investigator: Esther Lázaro
Non academic entity: Federación Española de Enfermedades Neuromusculares
Contact: Antonio Álvarez
Start date: 01/09/2015
End date: 05/09/2017
Financiation scheme: Basque Government 2012 (Aid for Research)
The project Neuro-e-motion focuses on the creation, development and validation of programs psychosocial assessment and intervention 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 programs validated with samples of people with rare diseases statewide.
- The generation of social support networks affected by rare diseases and their families.
- The direct effect on the population of patients and families through national and international dissemination (publications briefings, guides, articles impact journals 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 programs 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 obtaining the 13th edition of the Award for Research Deusto-Bank Santander