Título completo: Platform for sharing best practices for management of rare diseases (Rare Best Practices)

Subvencionado por: Comisión Europea (FP7-HEALTH.2012.2.4.4-3-305690)

Subvención concedida: 60.000 €

Duración: 4 años (2013-2016)

Investigador principal: Domenica Taruscio

Investigadores asociados (SESCS): Lilisbeth Perestelo Pérez

Description:

RARE-Bestpractices is a four year project (January 2013-December 2016) funded by the European Commission under the FP7 Cooperation Work Programme: Health-2012. The project focuses to the specific action HEALTH.2012.2.4.4-3: Best practice and knowledge sharing in the clinical management of rare diseases.

The  main goal of the project is to create a platform to improve the management of rare disease patients. It aims to: promote communication on the management of rare diseases by disseminating trustworthy guidelines globally, identify and prioritize rare diseases research needs, facilitate timely, effective and efficient translation of research results into patient oriented strategy on the clinical as well as the public health level, in support to IRDiRC activities.

The project is organized in 8 Work Packages (WPs):

• WP1. Scientific coordination, networking
• WP2. Platform infrastructure
• WP3. Agree upon methodology for production of guidelines on clinical management of rare diseases
• WP4. Collection of best practices and research recommendations on rare diseases
• WP5. Rare diseases technologies and value assessment
• WP6. Dissemination
• WP7. Collaboration with the International Rare Diseases Research Consortium (IRDiRC)
• WP8. Project management

Persona de contacto: Lilisbeth Perestelo Pérez (lperperr@gobiernodecanarias.org)