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Content archived on 2024-06-25

Platform of information services for the coordination of rare disease research with various stakeholders from research, SMEs and patient organisations and the coordination of early clinical trials

Objective

In the field of rare diseases, it is impossible to reach a critical mass of resources at national level. To achieve a European critical mass of experts and operational partners, all the proposed actions are based on the coordination and development of already existing and active networks and organisations across Europe: Orphanet, Eurordis, EPPOSI, EuropaBio, EBE. The project aims at developing information tools to address in a comprehensive and integrated approach the set of factors that currently affects research on rare diseases and its coordination. The specific objectives are: (1) to develop an information service, freely accessible on Internet, dedicated to research activities in the field of rare diseases and orphan medicinal products, including a database of research projects, funded at MS level and at the EU level, and a database of collections and research networks. (2) to develop services aiming at speeding up the enrolment of patients in clinical research. (3) to develop a database of research projects with development potential, to help scientists and Industry establish the necessary partnerships. (4) to organise a workshop with all stakeholders to discuss known bottlenecks and find solutions. This project is based on input from the following (1) an EU funded information service on rare diseases: Orphanet (www.orpha.net) (2) a European platform of Patients organization, Science and Industry (EPPOSI) which actively supports partnering activities. (3) an umbrella organization of patient support groups (Eurordis) involved in supporting research and regulatory activities. The project aims at establishing the platform of services in 11 European countries in the pilot phase in order to propose an extension to the 25 European countries in 2 years time. Ultimately, the goal is to convert scientific developments into diagnostic tools and therapies as quickly as possible...

Fields of science (EuroSciVoc)

CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.

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Keywords

Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)

Topic(s)

Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.

Call for proposal

Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.

FP6-2002-LIFESCIHEALTH
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Funding Scheme

Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.

SSA - Specific Support Action

Coordinator

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE
EU contribution
No data
Address
101 Rue de Tolbiac
PARIS
France

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Total cost

The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.

No data

Participants (17)

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