European Partnership on Rare Diseases (ERDERA) (Phase 2)

Expected Outcome: This topic aims at supporting activities that are enabling or contributing to one or several expected impacts of destination “Tackling diseases and reducing disease burden”. To that end, proposals under this topic should aim to deliver results that are directed at, tailored towards and contributing to all the following expected outcomes: The EU is reinforced as an internationally recognised driver of research and innovation in Rare Diseases (RD) and thereby substantially contributing to the achievement of the Sustainable Development Goals related to rare diseases. Research funders align, adopt and implement their RD research policies allowing for the optimal generation and translation of knowledge into meaningful health products and interventions responding to the needs of people living with a rare disease across Europe and globally. The RD research community at large benefit from and use an improved comprehensive knowledge framework and cross-border FAIR [1] data access and analysis, including rare diseases registries, by integrating the EU, national/regional data and information infrastructures to improve translational research. People living with a rare disease, including those from underrepresented communities, benefit from a more timely, equitable access to innovative, sustainable and high-quality healthcare including novel diagnosis and treatments, taking stock of highly integrated research and healthcare systems. Researchers, innovators -as well as people living with a rare disease and their advocates (as co-creators)- effectively constitute and operate into an integrated research and innovation ecosystem to deliver cost-effective diagnosis and treatments. Public and private actors, including civil society (e.g. Non-Governmental Organisations, charities), establish coordinated and efficient multi-stakeholder collaborations at EU and national (including regional) levels, allowing for more effective clinical research, for example aiming at improved success rates of therapeutic development. Scope: This topic targets an action under Article 24(2) HE Regulation aiming to add additional activities to existing grant agreements, together with additional partners (if relevant) that would deliver on those activities. The award of a grant to continue the partnership in accordance with this call should be based on a proposal submitted by the coordinator of the consortium funded under topic HORIZON-HLTH-2023-DISEASE-07-01: “European Partnership on Rare Diseases” and the additional activities (which may include additional partners) to be funde…