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A European Platform of Integrated Information Services for Researchers in the Field of Rare Diseases and Orphan Drugs Supporting Team and Project Building

A European Platform of Integrated Information Services for Researchers in the Field of Rare Diseases and Orphan Drugs Supporting Team and Project Building

Objective

This project aims at creating a set of tools intended to facilitate collaborations between academic teams, SMEs and even major companies, in the field of rare diseases (RD). These tools will contribute to building up a community of stakeholders with the ultimate goal of speeding up RD research and development, providing diagnostic tools and therapies as quickly as possible. The specific objectives are to: - identify expert groups in Europe, on-going funded research projects, technological platforms, databases and biobanks relevant to RD research and to release the information in a user-friendly manner on the existing Orphanet website. - identify, among research projects funded at the MS level and at the EU level, those which are in need of partnership with other academic teams and/or which have a potential for market development and may benefit from a partnership with Industry. - release the information on partnership opportunities on the existing OrphanXchange website and adapt the website to meet the needs of all the types of partnerships identified so far. - develop partner search facilities based on the above mentioned databases and on an ad-hoc basis. - develop an electronic newsletter informing the community about newly posted partnership requests and business opportunities. - organise two workshops with top experts to analyse areas in need of collaborative research projects. The new facilities will be developed from three existing RD websites previously funded through EC grants: - www.orphanplatform.org serving as a management tool and a follow-up tool between partners. - www.orphanXchange.org serving as a tool to facilitate partnership between academic researchers, Industry, and private companies - www.orpha.net providing information on on-going research activities in Europe. This project is based on input from four EU projects: Orphanet, OrphanPlatform, E-Rare (www.erare.eu) and the RD Task Force (www.rdtf.org).

Coordinator

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

Address

Rue De Tolbiac 101
75654 Paris

France

Activity type

Higher or Secondary Education Establishments

EU Contribution

€ 402 901

Administrative Contact

Ségolène Aymé (Dr.)

Participants (12)

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KATHOLIEKE UNIVERSITEIT LEUVEN

Belgium

EU Contribution

€ 48 150

FONDAZIONE CASA SOLLIEVO DELLA SOFFERENZA

Italy

EU Contribution

€ 42 933

AGENCIA ESTATAL CONSEJO SUPERIOR DEINVESTIGACIONES CIENTIFICAS

Spain

EU Contribution

€ 48 150

THE UNIVERSITY OF MANCHESTER

United Kingdom

EU Contribution

€ 99 000

MEDIZINISCHE HOCHSCHULE HANNOVER

Germany

EU Contribution

€ 96 300

MEDIZINISCHE UNIVERSITAET WIEN

Austria

EU Contribution

€ 36 113

EESTI BIOKESKUS

Estonia

EU Contribution

€ 24 775

UNIVERZITA KARLOVA

Czechia

EU Contribution

€ 20 063

VAESTOLIITTO RY

Finland

EU Contribution

€ 32 100

INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA

Poland

EU Contribution

€ 26 471

ACADEMISCH ZIEKENHUIS LEIDEN

Netherlands

EU Contribution

€ 48 150

KAROLINSKA INSTITUTET

Sweden

EU Contribution

€ 32 100

Project information

Grant agreement ID: 201230

Status

Closed project

  • Start date

    1 May 2008

  • End date

    30 April 2011

Funded under:

FP7-HEALTH

  • Overall budget:

    € 1 070 281

  • EU contribution

    € 957 206

Coordinated by:

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

France

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