RAREDISEASEPLATFORM

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

 Coordinatore INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) 

 Organization address address: 101 Rue de Tolbiac
city: PARIS
postcode: 75654

contact info
Titolo: Dr.
Nome: Ségolène
Cognome: Aymé
Email: send email
Telefono: +33 1 56 53 81 37
Fax: +33 1 56 53 81 38

 Nazionalità Coordinatore France [FR]
 Sito del progetto http://www.rdplatform.org
 Totale costo 1˙070˙281 €
 EC contributo 957˙206 €
 Programma FP7-HEALTH
Specific Programme "Cooperation": Health
 Code Call FP7-HEALTH-2007-A
 Funding Scheme CSA-SA
 Anno di inizio 2008
 Periodo (anno-mese-giorno) 2008-05-01   -   2011-04-30

 Partecipanti

# participant  country  role  EC contrib. [€] 
1    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)

 Organization address address: 101 Rue de Tolbiac
city: PARIS
postcode: 75654

contact info
Titolo: Dr.
Nome: Ségolène
Cognome: Aymé
Email: send email
Telefono: +33 1 56 53 81 37
Fax: +33 1 56 53 81 38

FR (PARIS) coordinator 0.00
2    ACADEMISCH ZIEKENHUIS LEIDEN

 Organization address address: Albinusdreef 2
city: LEIDEN
postcode: 2333 ZA

contact info
Titolo: Ms.
Nome: Linda
Cognome: Ouwerkerk
Email: send email
Telefono: 31715269596
Fax: 31715268275

NL (LEIDEN) participant 0.00
3    AGENCIA ESTATAL CONSEJO SUPERIOR DE INVESTIGACIONES CIENTIFICAS

 Organization address address: CALLE SERRANO 117
city: MADRID
postcode: 28006

contact info
Titolo: Ms.
Nome: Mar
Cognome: Garcia Ferrer
Email: send email
Telefono: 34915854984
Fax: 34915855360

ES (MADRID) participant 0.00
4    EESTI BIOKESKUS

 Organization address address: Riia 23b
city: TARTU
postcode: 51010

contact info
Titolo: Prof.
Nome: Andres
Cognome: Metspalu
Email: send email
Telefono: +372 7 375066
Fax: +372 7 420 286

EE (TARTU) participant 0.00
5    FONDAZIONE CASA SOLLIEVO DELLA SOFFERENZA

 Organization address address: VIALE CAPPUCCINI SC
city: SAN GIOVANNI ROTONDO FG
postcode: 71013

contact info
Titolo: Mr.
Nome: Giovanni
Cognome: Piano
Email: send email
Telefono: 390882000000

IT (SAN GIOVANNI ROTONDO FG) participant 0.00
6    INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA

 Organization address address: Aleja Dzieci Polskich 20
city: WARSZAWA
postcode: 4730

contact info
Titolo: Prof.
Nome: Ewa
Cognome: Pronicka
Email: send email
Telefono: 48228157490
Fax: 48228157489

PL (WARSZAWA) participant 0.00
7    KAROLINSKA INSTITUTET

 Organization address address: Nobels Vag 5
city: STOCKHOLM
postcode: 17177

contact info
Titolo: Mr.
Nome: Thomas
Cognome: Walstam
Email: send email
Telefono: 46851773487
Fax: 46851771774

SE (STOCKHOLM) participant 0.00
8    KATHOLIEKE UNIVERSITEIT LEUVEN

 Organization address address: Oude Markt 13
city: LEUVEN
postcode: 3000

contact info
Titolo: Ms.
Nome: Maria
Cognome: Vereeken
Email: send email
Telefono: +32 16 326504
Fax: +32 16 326515

BE (LEUVEN) participant 0.00
9    MEDIZINISCHE HOCHSCHULE HANNOVER

 Organization address address: Carl-Neuberg-Strasse 1
city: HANNOVER
postcode: 30625

contact info
Titolo: Prof.
Nome: Joerg
Cognome: Schmidtke
Email: send email
Telefono: 495115000000
Fax: 495115000000

DE (HANNOVER) participant 0.00
10    MEDIZINISCHE UNIVERSITAET WIEN

 Organization address address: SPITALGASSE 23
city: WIEN
postcode: 1090

contact info
Titolo: Prof.
Nome: Herbert
Cognome: Budka
Email: send email
Telefono: 431404000000
Fax: 431404000000

AT (WIEN) participant 0.00
11    THE UNIVERSITY OF MANCHESTER

 Organization address address: OXFORD ROAD
city: MANCHESTER
postcode: M13 9PL

contact info
Titolo: Ms.
Nome: Liz
Cognome: Fay
Email: send email
Telefono: +44 161 275 7114
Fax: +44 161 275 2445

UK (MANCHESTER) participant 0.00
12    UNIVERZITA KARLOVA V PRAZE

 Organization address address: Ovocny trh 5
city: PRAHA 1
postcode: 11636

contact info
Titolo: Prof.
Nome: Milan
Cognome: Macek
Email: send email
Telefono: +4202 24433501
Fax: +420 2 24433520

CZ (PRAHA 1) participant 0.00
13    VAESTOLIITTO RY

 Organization address address: KALEVANKATU 16
city: HELSINKI
postcode: 100

contact info
Titolo: Dr.
Nome: Riitta
Cognome: Salonen
Email: send email
Telefono: +358 9 61622219
Fax: +358 9 645018

FI (HELSINKI) participant 0.00

Mappa


 Word cloud

Esplora la "nuvola delle parole (Word Cloud) per avere un'idea di massima del progetto.

facilities    expert    website    patients    going    rd    biobanks    databases    therapies    rarediseaseplatform    smes    release    partnership    diagnostic    serving    orphanxchange    tools    disease    experts    drugs    industry    collaborations    rdplatform    teams    building    technological    orphanet    org    net    rare    report    intended    small    orpha    ultimate    platforms    groups    orphanplatform    academic    orphan    diseases    cooperation    http    stakeholders    workshops    tool    community    final    search    companies   

 Obiettivo del progetto (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).'

Introduzione (Teaser)

A collaboration among 13 European countries resulted in the generation of a project-building platform to help researchers in the field of rare diseases. The consortium set up efficient, multidisciplinary teams to tackle research challenges.

Descrizione progetto (Article)

Diseases that affect one in 2 000 people are considered to be 'rare'. They are often life-threatening or chronically debilitating disorders and most of them have a genetic origin.

The very small number of patients affected by a specific rare disease results in fragmentation of research efforts and in limited potential for commercial development of medicinal products. However, patients with rare diseases are entitled to the same level and quality of healthcare.

For this reason, cooperation among research groups working on rare diseases with clinical teams and biotech companies is urgently required in order to convert scientific developments in the field into diagnostic tools and therapies.

The EU-funded Rarediseaseplatform project aimed at creating a set of tools intended to facilitate collaborations among academic teams, small and medium-sized enterprises (SMEs) and even major companies in the field of rare diseases. These tools will help to speed up research and development by supporting the cooperation of experts, researchers and companies. The ultimate goal is to generate and share diagnostic tools and medical products.

Partners constructed a publicly available website (http://www.rdplatform.org/) highlighting the scope and activities of the project. Any information on expert groups in Europe, ongoing funded research projects, technological platforms, databases and biobanks relevant to rare diseases research was released on the existing Orphanet website.

A new multiple-criteria search engine was set up to facilitate accessibility to information regarding rare diseases research and availability of orphan drugs. Additionally, a new Orphanet report series was published to present the rare disease networks in Europe alongside reports on patient registries and databases in Europe.

The information collected during the project was disseminated in two workshops, providing a clear picture on the current status of research and funding in the field of rare diseases. The work of the consortium culminated in a final report on the state of the art of research and development in Europe in the field of rare diseases and orphan drugs.

The activities of the Rarediseaseplatform project worked to bring closer all stakeholders in the field of rare diseases in order to integrate related research. The established Orphanet website is a valuable step towards achieving that goal.

http://asso.orpha.net/RDPlatform/upload/file/RDPlatform_final_report.pdf

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