EJP-RD – Un programme conjoint européen au service de la communauté scientifique autour des maladies rares

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Monday, 12 October 2020 11:18 Written by 

Site web : www.ejprarediseases.org

D’après les estimations, les maladies rares affectent environ 30 millions de personnes en Europe. Pourtant, chacune d’elle concerne moins de 5 personnes sur 10 000 : c’est dire la quantité et la diversité de ces maladies. L’EJP-RD est un programme européen de très grande envergure sur les maladies rares, lancé en janvier 2019. Il réunit plus d’une centaine de partenaires de recherche : universités, centre de recherche, des agences de financement, des hôpitaux, des fondations et des associations de patients, issus de 35 pays. Coordonné par l’Inserm, ce programme est destiné à créer un environnement extrêmement favorable à la recherche, pour coordonner les travaux et accélérer le développement de médicaments pour ces maladies. Cofinancé par la Commission européenne et les Etats membres pour cinq ans, l’objectif est déjà de le pérenniser.

 

Fiche technique du Projet

•    Programme de financement: Commission Européenne, Horizon 2020 (co-financement), défi 1
•    Coordinateur: INSERM, Paris
•    Partenaires :

o    130 institutions, dans 35 pays
o    Dont les 24 “European Reference Networks” (ERN)

•    Budget Total: EUR 66 161 243.71
•    Subvention : EUR 55 073 831.17 (co-financement européen)
•    Durée : 2019-2024
•    Site web : www.ejprarediseases.org


 

Context / Contexte

Rare Diseases (RDs) are life threatening or chronically debilitating conditions from which fewer than five affected persons per 10,000 citizens in the European Union (EU) suffer. It is estimated that 6,000-8,000 different RDs exist, affecting between 6% and 8% of the population in the course of their lives. Research on RD remains scarce and scattered in different research and care organizations throughout the EU. This translates into delayed diagnosis, few medicinal products and difficult access to care. That is why RDs are a prime example of a research area that can strongly profit from coordination on a European and international scale.
RD research in Europe can be improved to overcome fragmentation, leading to efficacious use of data and resources, faster scientific progress and increase of competitiveness, and most importantly to decrease unnecessary hardship and prolonged suffering of RD patients

Objectives / objectifs

EJP RD has two major objectives:

  1. To improve the integration, the efficacy, the production and the social impact of research on RD through the development, demonstration and promotion of Europe/world-wide sharing of research and clinical data, materials, processes, knowledge and know-how
  2. To implement and further develop an efficient model of financial support for all types of research on RD (fundamental, clinical, epidemiological, social, economic, health service) coupled with accelerated exploitation of research results for benefit of patients.


To this end, the EJP RD actions are organized within five major Pillars assisted by the central coordination and transversal activities:
Pillar 0: Transversal and Communication
Pillar 1: Fundings and Calls
Pillar 2: Coordinated Access to Data and Services
Pillar 3: Training and Empowerment
Pillar 4: Innovation and Clinical Trials Support


Impact/ results – Impact/résultats

Rare diseases are capital example where pooling of expertise and resources together with coordination of national and European efforts are game changers. Despite significant efforts employed so far, RD research in Europe can be further improved, to overcome fragmentation, leading to efficacious use of data and resources, faster scientific progress and increase of competitiveness, and most importantly to decrease unnecessary hardship and prolonged suffering of RD patients. To that extent, EJP RD will be the first initiative gathering over ninety partners (and their networks, e.g. only the ERNs by themselves cover 900 healthcare units from near all EU Member States) from 32 countries representing key stakeholders in RD field. The strength of the EJP RD consortium lies not only in the number and diversity of its partners but also in its capacity to exploit the existing elements, detect their weaknesses, improve, innovate and deliver novel more efficient solutions.

Le rôle de LIP

LIP accompagne le Centre Léon Bérard, partenaire de ce programme, pour le suivi administratif et financier de sa participation dans le projet. LIP représente également lorsque nécessaire, le CLB dans les réunions générale du projet.

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