PROMOTING RESEARCHES ON RARE DISEASES IN EUROPE: RARE DISEASES EUROPEAN PARTNER PROGRAM ACCEPTED

Despite the considerable investment and significant achievements made by the European Commission for the research of rare diseases (NH) for many years, the major problems in rare disease research in Europe can be solved by inclusive and patient-centered integrated strategies that return only from hospital to laboratory and back to hospital. To achive International Research Directory of Rare Diseases (IRDiRC)’s Horizon 2027, it is necessary.

Therefore, taking into account past achievements, a valid “rare disease research strategy geçerli across Europe should be developed and coordinated to include all factors and interventions associated with rare diseases. Efforts to create small groups or duplication should be avoided in order to use resources and data efficiently, to maximize the potential of already funded tools and infrastructures, and to facilitate the sharing of data, tools and experiences across Europe and beyond.

The recently approved European Joint Program – Rare Diseases (EJP-RD)’s main objective; to establish a comprehensive and urgently needed strategy that includes research, data, tools and clinics that will enable optimization and utilization of results, higher and faster diagnostic rates, faster drug discovery at lower costs, and improved patient care.

This will enable Europe to assume a leading role in the RD area, in addition to strengthening all its partners in the coming years.

  • to establish a sustainable and interoperable organization for sharing, based on the principles of data generation, reuse and FAIR (Fair, Accessible, Interoperable, Reusable),
  • Configure the connection with European Reference Networks,
  • to increase the transformation of research results into health services by financing high-quality, transformative research and effectively transfer innovation for use by SMEs and industry,

Encourage adapted research methodologies for RD research,

  • Capacity building for all relevant stakeholders for better research in the future,
  • to ensure that patients are involved in every step of the research path.

Co-ordinated by Inderm (headed by Daria Julkowska of the Institute for Genetics, Genomics and Bioinformatics (ITMO) headed by Catherine Nguyen) in France, the EJP-RD is a multi-stakeholder and European-weighted consortium of 85 full members and 71 tertiary parties. Canada, Japan and Australia will cooperate with the program. EJP-RD is the result of a comprehensive effort built on already existing resources, experience and work networks such as eRare, Orphanet, RD-Connect, EURORDIS, ERNs and existing research infrastructures such as ELIXIR, BBMRI, EATRIS,

ECRIN, INFRAFRONTIER.

EJP activities are organized in 4 main areas or columns:

1- Collaborative research funding

2- Innovative coordinated access to data and services

3- Capacity building and support

4- Accelerate the transformation of potential research and improve clinical research results

It is under the supervision of a structured management, including a strong co-ordination organization and a Policy Committee, to ensure compliance with the research organization at the national level and to prioritize activities. In order to improve these coordination efforts, each Member State is encouraged to form National Mirror Groups. This new program, which will start in January 2019, backed by EUR 55 million for five years, is a unique opportunity to transform and accelerate RD research in Europe. This large number and diversity of partners will be the first initiative to co-ordinate and improve the quality of life of individuals affected by rare diseases, with the main goal being to develop new treatment and diagnose for the entire NH, by providing the necessary level of integration and the development of a unique strategy to overcome RD challenges.

Last Updated At: 01/02/2019
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