EURORDIS’ Community Advisory Boards

Published by IRDiRC

Community Advisory Board Eurordis Medical Research Orphan Drug Development Patient Advocate Patient Information Patient Organisation Rare Disease Research and Drug Development

Patient Community Advisory Boards are groups established and operated by patient advocates. They facilitate discussions in a safe harbour setting and under strict rules, an MOU and CA on the latest developments and challenges related to medical research and procedures in a disease area with the company or body conducting the research. The CAB can cover from preclinical to post marketing topics. The CAB depending on the areas of discussion can invite scientific expert to serve as advisors.

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European Reference Networks

Published by IRDiRC

Clinical Collaboration European Reference Network Network Rare Disease Research and Drug Development Research Collaboration

Participating in research provides patients with access to cutting-edge treatments and benefit the population and the health services as a whole by leading to the development of more effective, high quality, cost-efficient treatments and healthcare delivery models. ERNs represent an unicum in the clinical and research worldwide collaborative panorama, indeed 24 ERNs span the over 6000 rare diseases by involving 300 EU HCPs and over 1000 specialized units in 25 EU countries

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European Joint Programme on Rare Diseases

Published by IRDiRC

European Union European Union Joint Programme for Rare Disease Network Research and Drug Development

The European Joint Programme Cofund is an instrument allowing high level strategic organization and performance of research activities in an organized and transversal manner.

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The Innovation Management Toolbox was originally developed through funding from the EJP RD project, which received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 825575. The continued development and maintenance of the Toolbox are now supported by the ERDERA partnership, funded under the European Union’s Horizon Europe Research & Innovation programme, grant agreement No. 101156595.

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