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Capacity-building for patient organisations to participate in Research Activities

Objective

The project aims at addressing the needs of patient organisations (POs) in the health research sphere to foster their participation in research activities. In order to achieve this overarching goal, the project has two main objectives:

- To develop a capacity-building module, ?Understanding clinical trial protocols?, with six sessions to be implemented in 3 EU Member States, as a pilot project that could be further extended to other Member States. The sessions aim at familiarising POs with the vocabulary, concepts and key issues of clinical research. The experimental module of these sessions has been developed in cooperation between EURORDIS and INSERM and successfully implemented in France. These capacity-building sessions will empower patient representatives and boost their informed participation into clinical research (public and private), as they will be involved as true partners in clinical trials. The sessions, open to POs for rare or common diseases, will be implemented and developed in cooperation between the national rare diseases alliance in Denmark, Italy and Spain, and the relevant national research institute partner in the EU-funded ECRIN project.

- To organise a two-day European Workshop ?Gaining access to rare diseases research resources?: a pilot workshop aimed at increasing the capacities of patient representatives to understand the concepts, vocabulary, policies and instruments of health research activities at EU level, in order to be able to engage into EU funded research projects, maximise the use of existing research resources and act as catalysers for the development of research on their own disease. This will improve patient organisations participation in the rare diseases priority area of the EU 7th Framework Programme of R&D as partners, project coordinators, as well as evaluators. This will also lead to an enhanced capacity for POs to help identifying research needs and collaborate in setting research priorities.

Call for proposal

FP6-2005-SCIENCE-AND-SOCIETY-19
See other projects for this call

Coordinator

EUROPEAN ORGANISATION FOR RARE DISEASES
Address
Plateforme Maladies Rares, 102 Rue Didot
Paris
France

Participants (4)

UNIAMO - FEDERAZIONE ITALIANA MALATTIE RARE
Italy
Address
Viale Glorioso, 13
Roma
RARE DISORDERS DENMARK (SJAELDNE DIAGNOSER)
Denmark
Address
Frederiksholms Kanal 2, 3. Sal
Kobenhavn K
FEDERACIÓN ESPAÑOLA DE ENFERMEDADES RARAS
Spain
Address
Avenida San Francisco Javier N9, Planta 10
Sevilla
INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MEDICALE
France
Address
101 Rue De Tolbiac
Paris