Draft proposal for a European Partnership on Rare Diseases under Horizon Europe
The European Commission has published a draft proposal for a European Partnership on rare diseases under the Horizon Europe funding programme. The document includes proposals developed by potential partners under the auspices of the European Commission. The aim of this Rare Diseases Partnership is to support national and regional patient-led research as well as the development of new and safe therapies, diagnosis and treatments, notably using health data and digital transformations and through public-private partnerships. To achieve these goals, the Partnership will fund and support collaborative research and multi-stakeholder collaborations, and will develop resources and expertise to boost European competitiveness in rare disease research and health care. The RD Partnership will start in 2023 and will end its mission in 2031.
The Rare Diseases Partnership will collaborate with the ERNs, Orphanet, and will build upon the experience of the EJP RD (2019-2023), Solve-RD, RD-Connect, as well as the 1+Million Genomes initiative. The Partnership will also collaborate with the Innovative Health Initiative (IHI), Fostering a European Research Area for Health Research (ERA4Health), as well as the European Partnerships on Personalised Medicine (PM) and Transforming Health and Care Systems (THCS).
The Partnership will build upon the rare disease community created by the EJP RD including research funders, researchers, health institutes and patients, while reinforcing it. The draft proposal indeed indicates that the Partnership will integrate patients at all levels of governance and during all the phases of the project, while increasing cooperation with the private sector as well as charities and foundations.
