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X-WR-CALDESC:Events for ERDERA
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DTSTART;TZID=UTC:20251216T150000
DTEND;TZID=UTC:20251216T170000
DTSTAMP:20260525T055655
CREATED:20251021T063545Z
LAST-MODIFIED:20251222T135455Z
UID:10000021-1765897200-1765904400@erdera.org
SUMMARY:Information Webinar - ERDERA Joint Transnational Call 2026
DESCRIPTION:This online webinar will introduce the forthcoming 2026 Joint Transnational Call\, “Resolving unsolved cases in rare genetic and non‑genetic diseases”. Participants will hear how the call fits within ERDERA’s Funding workstream and how it will support multinational\, interdisciplinary projects focused on delivering diagnostic clarity for people living with a rare disease. \nIt will outline scope\, eligibility\, timelines and expectations for patient partnership\, and signpost where to find national/regional rules and submission guidance. \nThe session will also cover how ERDERA’s services and networks can strengthen proposals. A short presentation will introduce ERDERA and its hubs\, including how the Clinical Research Network enhances diagnostic pathways and trial readiness by linking expert centres and harmonising procedures\, the Data Services Hub supports secure\, FAIR data sharing and analysis\, and the Expertise Services Hub offers practical guidance on study design\, regulatory pathways and methods. A dedicated segment on patient engagement will explain how meaningful PPIE is embedded throughout the call—from co‑defining priorities to governance and reporting—so that projects respond to patient‑need and drive real‑world impact. \nPreliminary agenda: \n\nPresentation of ERDERA: who we are and how our hubs support research across Europe;\nJTC 2026 introduction: scope\, eligibility\, timelines and evaluation;\nPatient engagement in research: expectations\, good practice and support for PPIE;\nExpertise support services: how to access methodological\, regulatory and clinical guidance to strengthen your consortium and proposal.\n\nPlease note that spots for this event are limited. If the link does not allow you to register\, please keep checking this website for further updates on how to receive the recording of the event.
URL:https://erdera.org/event/information-webinar-erdera-joint-transnational-call-2026/
CATEGORIES:Clinical Research,Data Hub,ERDERA,Expertise Services,Funding
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LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20251209T080000
DTEND;TZID=Europe/Brussels:20251211T170000
DTSTAMP:20260525T055655
CREATED:20251125T105959Z
LAST-MODIFIED:20251222T141722Z
UID:10000024-1765267200-1765472400@erdera.org
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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BEGIN:VEVENT
DTSTART;TZID=UTC:20251112T080000
DTEND;TZID=UTC:20251112T080000
DTSTAMP:20260525T055655
CREATED:20251110T140039Z
LAST-MODIFIED:20251110T140236Z
UID:10000023-1762934400-1762934400@erdera.org
SUMMARY:Accelerating Innovation Through Coordinated Research Platforms: The ERDERA Approach
DESCRIPTION:On November 12 at 11:00am (GMT+3) \, IBG RareBoost will host Dr. Başak Uysal from the ERDERA Coordination Team. She will deliver a presentation titled “Accelerating Innovation Through Coordinated Research Platforms: The ERDERA Approach.” The seminar will be held in a hybrid format. Please scan the QR code on the flyer or click here to register. \nThe seminar will highlight ERDERA’s role in building a unified European rare diseases research ecosystem and making Europe a global leader in rare disease research and innovation by integrating funding\, data\, clinical research\, and policy. ERDERA accelerates diagnosis\, therapy development\, and trial readiness through shared infrastructures and public-private collaboration. Acting as both a scientific and strategic platform\, it ensures that research outcomes translate into tangible benefits for patients across Europe.Through this discussion\, the aim is to illustrate how strategic coordination and data-driven governance can empower rare diseases community in Europe and globally to move from fragmented initiatives to a cohesive\, sustainable ecosystem that directly benefits patients and researchers alike.  \nAbout the Speaker: İlkay Başak Uysal\, Ph.D.\, is a scientific project manager specializing in innovation in healthcare and life sciences. She currently serves on the coordination team of the ERDERA project at INSERM that manages strategic and operational processes within Europe’s rare disease research ecosystem. Başak holds a Ph.D. in women’s sexual and reproductive health\, complemented by strong academic foundations in bioinformatics and molecular biology. Quadrilingual (Turkish\, English\, French\, and German)\, and with over ten years of combined experience in academia and industry\, her expertise spans health research\, public health\, biotechnology\, product strategy\, and market analysis. She has worked with French and European funding proposals\, and strategic scientific planning\, while also developing holistic approaches to women’s health.  Başak is committed to fostering sustainable patient focused health solutions through multidisciplinary collaboration.
URL:https://erdera.org/event/accelerating-innovation-through-coordinated-research-platforms-the-erdera-approach/
CATEGORIES:Accelerator,Clinical Research,Data Hub,Funding,International Alignment
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/11/download-24.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251103
DTEND;VALUE=DATE:20251105
DTSTAMP:20260525T055655
CREATED:20251001T125433Z
LAST-MODIFIED:20251009T121651Z
UID:10000013-1762128000-1762300799@erdera.org
SUMMARY:XVII Foresight Training Course | From research to access: how does Europe speed up the availability of medicines for unmet needs?
DESCRIPTION:The course will focus on the current status and advancements of clinical research especially to address unmet medical needs. Innovative methodologies\, regulatory challenges\, and the involvement of adolescents in clinical trials will be discussed. The state of the art of funding strategies and investments will be reviewed\, considering public incentives and public-private funds at EU\, national and regional level. Access-related issues\, such as joint procurement\, national policies\, HTA\, and patient involvement in decision-making and access procedures will also be covered. \nAdditional details and registration here.
URL:https://erdera.org/event/xvii-foresight-training-course-from-research-to-access-how-does-europe-speed-up-the-availability-of-medicines-for-unmet-needs/
CATEGORIES:Clinical Research,Expertise Services,Funding,International Alignment,Patient Involvement (PPIE),Training & Education
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/10/Captura-de-pantalla-2025-10-01-165257-e1759330452170.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251027
DTEND;VALUE=DATE:20251029
DTSTAMP:20260525T055655
CREATED:20250801T074706Z
LAST-MODIFIED:20251222T141631Z
UID:10000008-1761523200-1761695999@erdera.org
SUMMARY:World Orphan Drug Congress Europe 2025
DESCRIPTION:We’re pleased to announce that ERDERA will be attending #WODC2025 in Amsterdam on 27–28 October\, driving collaboration and advancing research in the field of rare diseases. Come and visit us at our booth 10.512! \nMore information soon.
URL:https://erdera.org/event/world-orphan-drug-congress-europe-2025/
LOCATION:RAI Convention Center\, Europaplein 24\, 1078 GZ Amsterdam\, Netherlands\, Amsterdam\, Netherlands
CATEGORIES:Clinical Research,Funding,International Alignment
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/08/WODC-1200-x-1200-Generic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250605
DTSTAMP:20260525T055655
CREATED:20251125T113725Z
LAST-MODIFIED:20251125T113725Z
UID:10000025-1748908800-1749081599@erdera.org
SUMMARY:13th European Conference on Rare Disease and Orphan Drugs
DESCRIPTION:Rare disease research has long driven breakthroughs in more common conditions\, reinforcing Europe’s role as a global leader in biotechnology and precision medicine. Investing in this field is not only a moral imperative—it is a strategic move to boost Europe’s competitiveness in the life sciences. This is especially important in the context of the deployment of the Life Science Strategy and on the eve of the adoption of the Biotech Act. \nECRD 2026 will be a pivotal moment for rare disease policy in Europe\, taking place five years after Rare2030 and midway to the 2028 WHO Global Plan target. At a time when the European Commission has yet to commit to a formal EU Action Plan\, the conference will unite stakeholders to assess progress and reignite momentum. \nThe event will launch a community-led effort to co-develop an EU Action Plan—or Strategic Framework—for Rare Diseases. This process begins with a “planning for a plan” approach\, defining the scope\, objectives\, structure\, and governance model rooted in accountability and cross-sector co-ownership. \nECRD 2026 will gather input through thematic sessions aligned with Rare Disease International’s regional taskforces\, ensuring global coherence. The conference will also define concrete actions: the launch of a stakeholder-based Steering Group\, a drafting roadmap\, and a coordinated timeline leading to the plan’s advancement and formalisation\, anchoring European leadership in global rare disease policy development. \nPublic registration for ECRD 2026 will open in December 2025. \nMore information here.
URL:https://erdera.org/event/13th-european-conference-on-rare-disease-and-orphan-drugs/
CATEGORIES:Clinical Research,ERDERA,Expertise Services,Funding,International Alignment,Patient Involvement (PPIE)
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/11/Rectangle_Generic_Banner_1600x900.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240926T080000
DTEND;TZID=UTC:20240926T170000
DTSTAMP:20260525T055655
CREATED:20240625T051440Z
LAST-MODIFIED:20251009T121742Z
UID:10000002-1727337600-1727370000@erdera.org
SUMMARY:Training for Resources joining the Rare Diseases Virtual Platform
DESCRIPTION:This training is intended for resources that would like to connect to the Virtual Platform (VP) that is developed in the context of the EJP RD Pillar2 activities. \nAt the end of this webinar\, you will be able to: \n\nDescribe how to interact with the Virtual Platform as part of a network of connected resources\nIdentify different means to onboard the Virtual Platform at Level 1 and Level 2 including the following\n\nMetadata model\n\nStructure of the metadata model and how to implement it\n\n\nFDP Index\n\nNetwork of connected resources\n\n\nBeacon-in-a-box\n\nPresent data to the VP via a Beacon endpoint\n\n\nFAIR-in-a-box\n\nPresent data to the VP using ontologies and semantic models\n\n\nMetadata validator\n\nTool to check the compliance of your metadata\n\n\n\n\n\nThis training is divided in three parts:\nThe first part of the webinar consists of a 30-minute description of the Virtual Platform and the advantages of connecting your resource to the Virtual Platform.\nIn the second part of the webinar (one hour) will showcase different ways to onboard the Virtual Platform.\nIn the third part of the webinar (30 minutes) will be dedicated to an interactive Q&A session with the technical experts.
URL:https://erdera.org/event/training-for-resources-joining-the-rare-diseases-virtual-platform/
CATEGORIES:Accelerator,Data Hub,Expertise Services,Funding
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2025/06/Training-for-rare-disease-resources-joining-the-Virtual-Platform-1024x576-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240828
DTEND;VALUE=DATE:20240829
DTSTAMP:20260525T055655
CREATED:20240625T051706Z
LAST-MODIFIED:20251009T121749Z
UID:10000003-1724803200-1724889599@erdera.org
SUMMARY:EJP RD Final Conference
DESCRIPTION:We are thrilled to invite you to the Final EJP RD Conference. Scheduled to take place from May 27th to May 28th\, 2024 at the Hotel Excelsior Bari\, Via G. Petroni\, 15\, Bari / Puglia\, Italy\, this conference is set to bring together leading experts\, professionals\, and enthusiasts from around the world. \nPlease note: the hybrid event is open in person only to invited people. The event is open for all online. \nEvent Highlights: \n\nDates: Monday\, May 27 – Tuesday\, May 28\, 2024\nVenue: Hotel Excelsior Bari\, Via G. Petroni\, 15\, Bari / Puglia\, Italy\nRegistration deadline: May 22nd\, 2024 – Registration is open here.\nAgenda available here.\n\nThis event is a partner event to the 12th European Conference on Rare Diseases and Orphan Products (ECRD). More information here.
URL:https://erdera.org/event/ejp-rd-final-conference/
CATEGORIES:Funding,International Alignment
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/06/EJP-RD-final-conference-1-724x1024-1.png
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