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SUMMARY:High-Level Meeting on a European Research and Innovation Ecosystem for Rare Diseases
DESCRIPTION:This three-day event will gather key stakeholders\, including EU policymakers\, industry leaders\, patient advocacy groups\, researchers\, and healthcare providers. Its goal is to identify concrete actions and incentives to enhance innovation across the rare disease ecosystem. \nBy involving all actors in the development\, approval\, and access to new therapies\, its aim is to establish a predictable regulatory pathway\, ensuring that the benefits of scientific advancements reach all European citizens\, particularly those often left behind. \nInspired by the recent recommendations from the Draghi\, Letta\, and Heitor reports\, our agenda will focus on the following key topics: \n\nDay 1: Fostering competitive excellence in science and innovation through support for fundamental research\, clinical trials\, and translational research.\nDay 2: Building pan-EU infrastructure to strengthen European Reference Networks and enhance capacity\, including newborn screening and the use of data and AI to expedite diagnosis and treatment initiation.\nDay 3: Overcoming fragmentation by establishing a coherent policy and funding regulatory framework specific to rare diseases\, highlighting the importance of cross-border care.\n\nA key objective of the HLM will be to advocate for the EU’s adoption of a European Declaration on Rare Diseases. \nThis formal commitment aims to create a sustainable Research and Innovation Ecosystem for rare diseases\, ensuring ongoing dialogue and collaboration among all relevant stakeholders. Additionally\, we will push for dedicated funding to be allocated within the next Multiannual Financial Framework (MFF) 2028-2034. More information here and registration here.
URL:https://erdera.org/event/high-level-meeting-on-a-european-research-and-innovation-ecosystem-for-rare-diseases/
CATEGORIES:Accelerator,Clinical Research,Funding,International Alignment,Patient Involvement (PPIE)
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/11/b4b-rare-save-the-date.png
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