BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//ERDERA - ECPv6.15.18//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:ERDERA
X-ORIGINAL-URL:https://erdera.org
X-WR-CALDESC:Events for ERDERA
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Brussels
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20251026T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20260329T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20261025T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260305
DTEND;VALUE=DATE:20260307
DTSTAMP:20260408T092926
CREATED:20260109T105519Z
LAST-MODIFIED:20260303T151809Z
UID:10000030-1772668800-1772841599@erdera.org
SUMMARY:Postponed: Advancement of Treatments for Rare Diseases
DESCRIPTION:  \n\nNOTIFICATION FROM THE ORGANISING COMMITTEE \nDear delegates\, \nIn light of the latest developments and as a precautionary measure\, the Cyprus Presidency of the Council of the EU 2026 has decided to postpone this week’s Presidency Conference Advancement of Treatments for Rare Diseases\, scheduled to take place in Cyprus 5–6 March 2026. \nFurther information regarding possible re-arrangement and new dates will be communicated in due course. \nWe apologise for the inconvenience caused by these adjustments and thank you for your understanding. \nYours sincerely\,\nThe Organizing Committee\nConference “Advancement of Treatments for Rare Diseases”\nCyprus Presidency of the Council of the European Union 2026 \n\nThe Cyprus Institute of Neurology & Genetics and the Deputy Ministry of Research\, Innovation and Digital Policy\, are organising the conference “Advancement of Treatments for Rare Diseases” on 5-6 March 2026\, at the Amphitheater\, The Cyprus Institute of Neurology & Genetics Nicosia\, Cyprus. \nRare Diseases affect approximately 30 million people across the European Union and present unique challenges due to their complexity\, rarity\, and limited treatment options. Advancing research\, improving access to innovative therapies\, and strengthening collaboration across Europe are essential to improving outcomes for patients and their families. \nThe Conference will feature the following key themes: \n\nStrengthening EU Collaboration for Rare Diseases\nAdvancing Research\, Innovation & Therapeutic Development\nImproving Regulatory Frameworks for Orphan Drugs\nEnsuring Accessibility\, Equity & Patient-Centred Care\nEnhancing Data Infrastructure\, Security & Digital Innovation\n\nThe target audience includes government ministries and public authorities; healthcare providers and clinical experts; researchers and the scientific community; representatives from the pharmaceutical and biotechnology industry; patient organisations and advocacy groups; data\, digital health\, and technology specialists; health economics\, ethics\, and legal experts; European funding bodies and research agencies; NGOs; and other high-level multi-stakeholder representatives. \nThe two-day event will highlight the EU’s ambition to make Europe a global leader in life sciences by 2030 and will focus on translating research and policy initiatives into tangible benefits for Rare Disease patients through better prevention\, diagnosis\, and treatment.
URL:https://erdera.org/event/advancement-of-treatments-for-rare-diseases/
LOCATION:Cyprus Institute of Neurology and Genetics\, Iroon Avenue 6\, Agios Dometios\, Nicosia\, 2371\, Cyprus
CATEGORIES:Clinical Research,Data Hub,ERDERA,Expertise Services,Funding,International Alignment,Patient Involvement (PPIE)
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/01/WEBSITE-BANNNER_1920X700-2-1-e1767956298334b.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251216T150000
DTEND;TZID=UTC:20251216T170000
DTSTAMP:20260408T092926
CREATED:20251021T083545Z
LAST-MODIFIED:20251222T145455Z
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
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2025/09/pexels-armin-rimoldi-5553050-min-scaled-e1761034679809.jpg
LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251114
DTEND;VALUE=DATE:20251117
DTSTAMP:20260408T092926
CREATED:20251014T085900Z
LAST-MODIFIED:20251014T085900Z
UID:10000019-1763078400-1763337599@erdera.org
SUMMARY:ICORD2025 - International Collaboration on Rare Diseases and Orphan Drugs
DESCRIPTION:The XVII International Conference of ICORD (International Collaboration on Rare Diseases and Orphan Drugs) will take place on 14–16 November 2025 at the Sabancı Cultural Center\, Dokuz Eylül University\, İzmir\, Türkiye. Led by the Organising Committee chaired by Prof Uğur Özbek from the İzmir Biomedicine and Genome Center (IBG)\, the meeting will convene researchers\, healthcare professionals\, patient advocates and policymakers to share knowledge and advance collaboration for better diagnosis\, treatment and care for people living with a rare disease. \nWhy this matters for Europe’s rare disease agenda\nICORD is a long‑standing forum for practical exchange across disciplines and borders. Its 2025 programme is expected to spotlight advances in clinical research readiness\, data‑driven discovery\, and access to therapies—topics that align closely with ERDERA’s mission to accelerate patient‑centred research and innovation across Europe. By connecting international partners with European Reference Networks\, academia\, SMEs and industry\, the conference supports earlier and more accurate diagnosis\, better trial design\, and faster translation of research into real‑world benefits.
URL:https://erdera.org/event/icord2025-international-collaboration-on-rare-diseases-and-orphan-drugs/
LOCATION:Sabancı Cultural Center\, Yeşiltepe\, Mustafa Kemal Sahil Blv. No:25\, Izmir\, 35260\, Turkey
CATEGORIES:Clinical Research,Data Hub,ERDERA,Expertise Services,International Alignment,Patient Involvement (PPIE)
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/10/download-2-e1760432327900.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251103
DTEND;VALUE=DATE:20251105
DTSTAMP:20260408T092926
CREATED:20251001T145433Z
LAST-MODIFIED:20251009T141651Z
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;TZID=UTC:20251014T133000
DTEND;TZID=UTC:20251014T173000
DTSTAMP:20260408T092926
CREATED:20251013T080932Z
LAST-MODIFIED:20251222T151620Z
UID:10000015-1760448600-1760463000@erdera.org
SUMMARY:ERDERA-GDI Official Joint Workshop
DESCRIPTION:the ERDERA-GDI Official Joint Workshop\, scheduled to take place on Monday\, 14 October 2025\, from 13:30 to 17:30 CET at the Novotel Paris Centre Tour Eiffel (https://all.accor.com/hotel/3546/index.fr.shtml). In person attendance is highly encouraged but hybrid access for remote participants is also possible. \nThis strategic half-day workshop will convene distinguished contributors from both the European Rare Diseases Research Alliance (ERDERA) and the Genomic Data Infrastructure (GDI) initiatives. The objective is to foster alignment\, disseminate updates\, and explore collaborative opportunities in the use case of rare disease. \n\nWorkshop Objectives\n\nProvide a high-level overview of ERDERA and GDI initiatives\, including current activities and strategic goals\nShare updates on technical progress\, ethical and regulatory aspects\, and national program developments\nDiscuss the Rare Disease Use Case and its relevance for federated analysis and data harmonization\nIdentify opportunities for mutual support and demonstration projects\nDecide action items and outline next steps for continued collaboration\n\n\nParticipants\nThe workshop will bring together representatives from: \n\nERDERA Data Services Hub Workstream (DSH)\nERDERA National representatives from France\, Sweden\, Denmark\nGDI Pillars II and III\n1+MG RD European Working Group\nGenome of Europe\nCAD (Central Data Analyzer)\nELIXIR Europe\n\nConfirmed participants include: Daria Julkowska\, Serena Scollen\, Juan Arenas\, Sergi Beltran Agullo\, Philippe Jean Bousquet\, Julien Thevenon\, Morris Swertz\, Gerieke Been\, Steven Laurie\, Antonio Rausell\, Angela Saenz Monroy\, Manon Lebras\, Bengt Persson\, Frédérique Nowak\, Gisele Bonne\, Emmanuelle Genin\, Salvador Capella Gutierrez\, Carles Hernandez-Ferrer\, Dylan Spalding. \nLocation: Novotel Paris Centre Tour Eiffel. 61 quai de Grenelle\, 75015 PARIS\, France \nHybrid Access: Join the meeting here \nMeeting ID: 368 170 006 413 \nPasscode: zC7ks2UH \n\nAgenda\nWelcome & Opening Remarks (5min) \nERDERA and GDI Overview/Initiatives (25 min) \n\nSpeakers: Daria Julkowska\, Serena Scollen\n\nCurrent Status & Future Plans (1h 15 min) \n\nContent: Updates\, ongoing work\, and strategic direction\nChairs: Bengt Persson\, Julien Thevenon\nSpeakers:\n\nGDI Ethics and regulatory aspects\, Juan Arenas (10 minutes)\nGDI current status\, technical overview and future plans\, Dylan Spalding (10min)\n1+MG RD Use Case\, Sergi Beltran Agullo (10min)\nQuestions & Answers for GDI/1+MG (5min)\nERDERA DRW overview\, Lisenka Vissers (10min)\nERDERA RD federated analysis use case (10min)\nERDERA DSH: the current status and technical overview\, Morris Swertz (10min)\nQuestions & Answers for ERDERA (5min)\n\n\n\nCoffee Break (30min) \nCurrent Status & Future Plans – cont. (20 min) \n\nGDI/ERDERA update per country (current status and future plans of national personalized genomic medicine programmes\, data management\, data analysis)\n\nFrance (Philippe Jean Bousquet\, Frédérique Nowak) (5min)\nSweden (Bengt Persson) (5min)\nDenmark (Asuman Zeynep Tümer) (5min)\nJoint Q&A (5min)\n\n\n\nDiscussion: Opportunities for Mutual Support & Demonstration Projects (1h) \n\nFocus: Collaboration\, project opportunities\, and use case discussion\nCo-chairs: Sergi Beltran Agullo\, Carles Hernandez-Ferrer\n\nAction Planning & Wrap-Up (including Closing Remarks) (20 min) \n\nFinalize action items\, responsibilities\, and next steps.\nChairs: Morris Swertz\, Juan Arenas
URL:https://erdera.org/event/7853/
LOCATION:Novotel Paris Centre Tour Eiffel\, 61 quai de Grenelle\, Paris\, 75015\, France
CATEGORIES:Accelerator,Clinical Research,Data Hub,ERDERA,Expertise Services
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/10/download-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250605
DTSTAMP:20260408T092926
CREATED:20251125T123725Z
LAST-MODIFIED:20251125T123725Z
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:20260408T092926
CREATED:20240625T071440Z
LAST-MODIFIED:20251009T141742Z
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
END:VCALENDAR