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BEGIN:VEVENT
DTSTART;TZID=Europe/Dublin:20261113T100000
DTEND;TZID=Europe/Dublin:20261113T171500
DTSTAMP:20261006T085854Z
CREATED:20261002T111118Z
LAST-MODIFIED:20261006T085854Z
UID:10000054-1794564000-1794590100@erdera.org
SUMMARY:Why Rare Diseases Matter for Europe's Future Embedding Research and Innovation as Standard of Care in Rare Disease
DESCRIPTION:Embedding Research and Innovation as Standard of Care in Rare Diseases \nResearch as Care: Why Rare Diseases Matter for Europe’s Future will take place on 13 November 2026 in Dublin as an event associated with Ireland’s Presidency of the Council of the European Union. \nOrganised by Rare Diseases Ireland and EURORDIS–Rare Diseases Europe\, the event will examine how research and innovation can be embedded as part of the standard of care for rare diseases. It is being held in collaboration with Debra Ireland\, the Irish Platform for Patient Organisations\, Science and Industry (IPPOSI)\, the Neurological Alliance of Ireland (NAI)\, and the Nicolaides-Baraitser Syndrome (NCBRS) Worldwide Foundation. \nAcross three sessions\, the programme will address the Biotech Act\, research and innovation as standard of care\, and the call for a European Action Plan on Rare Diseases. It will consider how patient partnership can make research more relevant and how rare disease research and innovation can contribute to health outcomes and Europe’s life sciences ecosystem. \nThe event takes place during Ireland’s 2026 Presidency of the Council of the European Union and within an active EU legislative period covering the Biotech Act\, medical device and in vitro diagnostic regulation simplification\, the Critical Medicines Act and the EU pharmaceutical package.
URL:https://erdera.org/event/research-as-care-why-rare-diseases-matter-for-europes-future-embedding-research-and-innovation-as-standard-of-care-in-rare-disease/
LOCATION:Radisson Blu Royal Hotel Dublin\, Ireland
CATEGORIES:Patient Public Involvement and Engagement (PPIE),Policy and Regulation
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Berlin:20261116T140000
DTEND;TZID=Europe/Berlin:20261116T150000
DTSTAMP:20261104T151435Z
CREATED:20261015T112406Z
LAST-MODIFIED:20261104T151435Z
UID:10000055-1794837600-1794841200@erdera.org
SUMMARY:The Role of Ethics in ATMP Research and Development
DESCRIPTION:What ethics issues can be raised\, and how can resolving them become an advantage? \nThis webinar will explore the ethics issues most encountered in advanced therapy medicinal product (ATMP) research. It will examine the role of ethics in helping ensure that research and its products comply with regulatory requirements and in supporting a smooth clinical translation. \nParticular focus will be placed on issues of special importance in rare diseases\, such as research involving children and the human genome\, both of which are central to ATMP research. \nThe session will also look at how ethics can balance the influence of different stakeholders and bring the work of researchers and regulators together in the service of patients. \nSpeaker:\nJoana Namorado \nThis webinar is part of the ERDERA Ethics & Regulatory webinar series. To see the dates of upcoming episodes\, please check here.
URL:https://erdera.org/event/the-role-of-ethics-in-atmp-research-and-development/
CATEGORIES:ERDERA,Training and Education
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261125
DTEND;VALUE=DATE:20261127
DTSTAMP:20261001T095936Z
CREATED:20260929T144836Z
LAST-MODIFIED:20261001T095936Z
UID:10000053-1795564800-1795737599@erdera.org
SUMMARY:ERDERA Knowledge Exchange Meeting on Drug Repurposing for Rare Diseases
DESCRIPTION:The next ERDERA Knowledge Exchange Meeting\, taking place on 25–26 November in Riga\, will focus on drug repurposing for Rare Diseases\, with particular attention to opportunities for Underrepresented Countries (UCs). Participants will explore the drug repurposing pathway\, patient-centred approaches\, European initiatives and concrete examples from ERDERA-funded projects and national rare disease communities. Interactive discussions will address local barriers\, practical solutions and opportunities to build future collaborations within European networks. The meeting will conclude with closing remarks and next steps.\n\n\n\n\nThe meeting will offer both online and in-person participation. Register here.\n\n\n\n\n\n\n\n\nProgramme \nERDERA Knowledge Exchange Meeting on Drug Repurposing for Rare Diseases\n25–26 November\, Riga East University hospital\, (Hipokrāta iela 2\, Rīga) Latvia \n\n\n\nDay 1 — 25 November\n\n\n\n\nTime\nTitle\nSpeakers / details\n\n\n\n\n\nRegistration\n\n\n13.30–14:00\nCoffee break\n\n\nERDERA Introduction Session\nA short opening session to introduce ERDERA\, its role in rare disease research\, and the support landscape available across Europe.\n\n\n14:00–14.10\nWelcome\nBaiba Lāce. Clinical geneticist and Head of the Genetics Department at Riga East University Hospital; ERDERA WP24 ST 24.1 lead.\n\n\n14.10-14.30\nIntroductory presentation explaining ERDERA’s overall strategy and why drug repurposing is relevant within the broader rare disease ecosystem \n(On-line)\nDaria Julkowska. ERDERA scientific coordinator.\n\n\n14:30–14:50\nPresentation of the ERDERA Public-Private Collaboration Accelerator (PPCA) \n(On-line)\nXavier Merit. ERDERA Coordination.\n\n\n14.50-15.00\nWP24: Objectives\, Activities and Expected Outcomes:\nGonçalo Teixeira. ERDERA WP24 Lead for Underrepresented Countries.\n\n\nDrug Repurposing: Concepts and Applications\nThis session will exchange practical knowledge on how existing medicines can be explored for new uses in rare diseases\, from early identification of opportunities to routes toward patient access.\n\n\n15:00–15:20\nDrug repurposing for rare diseases: opportunities and impact \n(On-line)\nClaudia Fuchs / Zoe Alahouzou. EURORDIS representatives working in the rare disease field\, including Horizon Europe project REMEDi4ALL and patient-centred approaches to drug repurposing.\n\n\n15:20–15:50\nFrom discovery to patient access: the repurposing pathway:\nRick Thompson. CEO of Beacon for Rare Diseases\, with long-standing experience in developing drug repurposing work and supporting rare disease communities.\n\n\n15:50–16.10\nQ&A\n\n\n16.10- 16:30\nCoffee break\n\n\nEuropean drug repurposing initiatives and collaboration\nThis session will provide a knowledge exchange platform for European initiatives to present their approaches\, discuss practical collaboration models\, and explore how underrepresented countries can connect with ongoing repurposing activities. It will also highlight how these platforms and networks may support the development of collaborations and project ideas for future ERDERA Joint Transnational Calls.\n\n\n16:30–16:50\nREPO4EU\nHarald H.H.W. Schmidt. REPO4EU representative presenting mechanism-based drug repurposing and its potential to reduce time and cost in drug development.\n\n\n16:50–17:10\nEATRIS / REMEDi4ALL\nAnton Ussi. EATRIS ERIC / REMEDi4ALL. Operations & Finance Director at EATRIS ERIC\, specialising in public-public and public-private collaboration for translational medicine.\n\n\n17:10–17:40\nPanel discussion: How can underrepresented countries engage with European repurposing initiatives?\nPanellists: Rick Thompson\, Anton Ussi and Harald H.H.W. Schmidt \nModerator: Gonçalo Teixeira \nFormat: Moderated discussion and open exchange with participants.\n\n\n\nInformal get-together\n\n\n\n\n\n\nDay 2 — 26 November\n\n\n\n\nTime\nTitle\nSpeakers / details\n\n\n\n\nExperiences in Underrepresented Countries\nThis session will highlight successful examples of drug repurposing from underrepresented countries and disease communities.\n\n\n09:20–09:40\nAdvancing rare disease drug repurposing through collaborative preclinical research:\nEdgars Liepins. Leading Researcher\, The National Institute of Research and Innovation (NIRI)\, Latvia.\n\n\n09:40–10:00\nSATB2 syndrome treatment example\, Slovenia\nDunja Urbančič. SATB2 Europe. Representative involved in rare disease patient and clinical activities related to SATB2 syndrome.\n\n\n10:00–10:20\nPACS2 syndrome example\, Poland\nDominik Cysewski. PACS2 Research Foundation / Medical University of Bialystok. Representative of PACS2 syndrome research and patient-driven activities in Poland.\n\n\n10.20-10.40\nRADICAL-CDG Repurposing medication\, Advancing delivery\, and Deploying Innovative Chemistry to Aid the Lives of patients with Congenital Disorders of Glycosylation:\nHana Hansikova (TBC). First Faculty of Medicine\, Charles University\, Department of Pediatrics and Inherited Metabolic Diseases (Czechia)\n\n\n10.40-11.00\nMSD (multiple sulfatase deficiency) Action experience\, Ireland:\nAlan Finglas\, MSD Action. Alan Finglas is a patient advocate who founded MSD Action Foundation after his son was diagnosed with multiple sulfatase deficiency.\n\n\n11:00–11:30\nPanel Discussion: Local Bottlenecks and Shared Solutions. Building Future Collaborations \nAn interactive discussion on the main barriers to advancing drug repurposing locally\, with a focus on exchanging practical solutions\, stakeholder perspectives and opportunities for European alignment.\nPanellists: Dunja Urbančič\, Dominik Cysewski\, Hana Hansikova\, Alan Finglas \nModerator: Edgars Liepins\n\n\n11:30\nClosing remarks and next steps\n\n\n11:30-12:00\nCoffee break\, end of event\n\n\n\n\n\n\n  \n\n\n\nLearn more about ERDERA’s International Capacity Alignment efforts and they balance progress with global benchmarks\, harvesting national insight\, integrating proven methods\, and circulating new advances across borders.
URL:https://erdera.org/event/erdera-knowledge-exchange-meeting-on-drug-repurposing-for-rare-diseases/
CATEGORIES:ERDERA,International Alignment
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261125
DTEND;VALUE=DATE:20261128
DTSTAMP:20260824T074340Z
CREATED:20260626T132717Z
LAST-MODIFIED:20260824T074340Z
UID:10000045-1795564800-1795823999@erdera.org
SUMMARY:European Network Conference on Chromatinopathies (EU-CHROMNet)
DESCRIPTION:The European Network Conference on Chromatinopathies (EU-CHROMNet) will take place from 25 to 27 November 2026 at the Izmir Biomedicine and Genome Center (IBG)\, Türkiye. \n\nBringing together clinicians\, researchers and patient advocates from across Europe\, this two-and-a-half-day meeting aims to establish the first European network dedicated to chromatinopathies—rare genetic disorders caused by alterations in genes that regulate chromatin structure and organisation. \nOrganised by an international scientific committee\, the conference will foster collaboration and promote patient-centred research in the field of chromatinopathies. It will provide a platform for knowledge exchange\, networking\, and the development of future research and clinical initiatives. \nFurther details on registration and abstract submission will be made available in July 2026. \nThis conference is supported by the ERDERA Networking Support Scheme (NSS).
URL:https://erdera.org/event/european-network-conference-on-chromatinopathies-eu-chromnet/
CATEGORIES:International Alignment
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Berlin:20261125T130000
DTEND;TZID=Europe/Berlin:20261125T140000
DTSTAMP:20261105T131558Z
CREATED:20261105T131558Z
LAST-MODIFIED:20261105T131558Z
UID:10000059-1795611600-1795615200@erdera.org
SUMMARY:Diagnostic Research Workstream Webinar Series – Session 3: The Data Reanalysis Approach
DESCRIPTION:This webinar explains how ERDERA’s Diagnostic Research Workstream (DRW) reanalyses data from unsolved rare disease cases to identify new molecular diagnoses. Lisenka Vissers (Radboud university medical center\, Nijmegen\, the Netherlands) presents the reanalysis workflow\, from standardised analysis pipelines and ERN-specific Data Interpretation Task Forces (DITFs) to interdisciplinary Solvathons\, and shows how consortium research informs new standard pipelines. Participants will learn how systematic reanalysis works in practice and what drives diagnostic yield. \nSpeaker: Lisenka Vissers\, Radboud university medical center\, Nijmegen\, the Netherlands \nTime: 1:00 PM to 2:00 PM CET \nAbout the ERDERA Diagnostic Research Workstream Webinar Series. \nThe series brings together ERN healthcare professionals\, clinicians\, geneticists\, researchers\, and other stakeholders to learn about the work\, progress\, and outcomes of the ERDERA Diagnostic Research Workstream (DRW). \nSessions will cover the full scope of the workstream\, from governance and methodology to concrete analytical results\, offering audiences a transparent and evolving view of how ERDERA is advancing diagnostics in rare diseases. \nDelivered as online webinars\, the series is accessible to both internal ERN audiences and external expert communities\, reflecting ERDERA’s commitment to open knowledge-sharing and collaboration across borders. \nFind out more here.
URL:https://erdera.org/event/diagnostic-research-workstream-webinar-series-session-3-the-data-reanalysis-approach/
CATEGORIES:Clinical Research,ERDERA,Training and Education
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Berlin:20261204T120000
DTEND;TZID=Europe/Berlin:20261204T130000
DTSTAMP:20261105T130806Z
CREATED:20261104T133955Z
LAST-MODIFIED:20261105T130806Z
UID:10000057-1796385600-1796389200@erdera.org
SUMMARY:Ethics & Artificial Intelligence in Scientific Research Webinar: Secure your spot!
DESCRIPTION:Ethics & Artificial Intelligence in Scientific Research webinar \nThis webinar provides an overview of the ethical concerns related to the use of artificial intelligence (AI) in scientific research\, with a particular focus on rare diseases\, and introduces the concept of trustworthy AI. \nIt covers the ethics aspects to consider when AI tools are used in research\, and the provisions and recommendations of the key applicable ethics guidelines\, such as the Ethics Guidelines for Trustworthy AI\, to help guarantee the trustworthiness of AI tools. \nWho should attend:\nResearchers\, clinicians\, regulatory professionals\, ethicists and others involved in or supporting rare disease research. \nSpeaker:\nAnnalisa Landi \nWhen:\n4 December 2026\, from 12:00 CET \nThis webinar is part of the ERDERA Ethics & Regulatory webinar series. For the dates of upcoming episodes\, please check here. \nTraining resources are also available on the ERDERA Learning Portal.
URL:https://erdera.org/event/ethics-artificial-intelligence-in-scientific-research/
CATEGORIES:ERDERA,Policy and Regulation,Training and Education
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20261214T150000
DTEND;TZID=UTC:20261214T160000
DTSTAMP:20261022T091040Z
CREATED:20261022T090149Z
LAST-MODIFIED:20261022T091040Z
UID:10000056-1797260400-1797264000@erdera.org
SUMMARY:Information Webinar - ERDERA Joint Transnational Call 2027
DESCRIPTION:This information webinar for potential applicants to the 2027 Joint Transnational Call focuses on catalysing collaborative research for recently identified rare diseases. \nThe webinar is intended for potential applicants to ERDERA’s 2027 Joint Transnational Call\, “Catalysing Collaborative Research for Recently Identified Rare Diseases”. The call aims to support multinational\, interdisciplinary collaborations addressing recently identified rare diseases that remain scientifically underserved. \nIts focus is on generating the foundational knowledge needed for future therapeutic development\, through natural history studies and patient registries\, biomarker research\, relevant disease models and investigation of disease mechanisms. \nConsortia are expected to actively involve patient partners from the preparation of their proposals. Funding eligibility is subject to national and regional requirements\, and applications will follow a two-stage procedure\, with pre-proposals due on 1 February 2027 and full proposals on 24 June 2027. \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. \n 
URL:https://erdera.org/event/information-webinar-erdera-joint-transnational-call-2027/
CATEGORIES:Clinical Research,Data Hub,ERDERA,Expertise Services,Funding
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LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20270215
DTEND;VALUE=DATE:20270216
DTSTAMP:20261104T155348Z
CREATED:20261104T155159Z
LAST-MODIFIED:20261104T155348Z
UID:10000058-1802649600-1802735999@erdera.org
SUMMARY:EURORDIS Black Pearl Awards: Registrations are now open for the 16th edition!
DESCRIPTION:Taking place in February\, which also marks the occasion of Rare Disease Day\, the annual EURORDIS Black Pearl Awards celebrate the outstanding achievements of people living with a rare disease\, along with those who go that extra mile to make a difference to their lives. \nThe awards celebrate hard work\, innovative thinking and dedication to the rare disease community. \nSince 2012\, EURORDIS-Rare Diseases Europe has organised this event to recognise the major achievements made for and by the rare disease community\, and the commitment of patient advocates\, patient organisations\, policymakers\, scientists\, companies\, and others. \nAs of February 2023\, the awards have become a full hybrid event\, allowing people from across our community to attend the in-person ceremony and gala dinner in Brussels\, or to connect online from anywhere in the world. This unique evening offers a blend of celebration\, learning\, sharing experiences\, and stunning artistic performances! \nThe upcoming edition of the Awards will take place on Monday\, 15 February 2027 in Brussels and online\, and will also celebrate 30 years of EURORDIS’ work. \n 
URL:https://erdera.org/event/eurordis-black-pearl-awards/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20270310
DTEND;VALUE=DATE:20270313
DTSTAMP:20261006T104936Z
CREATED:20260921T081359Z
LAST-MODIFIED:20261006T104936Z
UID:10000040-1804636800-1804895999@erdera.org
SUMMARY:RE(ACT) Congress 2027
DESCRIPTION:RE(ACT) Congress 2027\nBuilding on the legacy of the RE(ACT) Congress series (now reaching its ninth edition)\, RE(ACT) continues to serve as a meeting point for scientific innovation and real-world impact. The Congress brings together international leaders\, renowned experts\, and emerging talents from across disciplines to share breakthrough results\, challenge ideas\, and help shape the research and policy landscape that will accelerate progress in rare diseases. \nOrganised by the European Rare Diseases Research Alliance (ERDERA)\, the International Rare Diseases Research Consortium (IRDiRC)\, and BLACKSWAN Foundation\, the RE(ACT) Congress embodies a shared commitment to overcoming rare disease challenges through collective action\, open collaboration\, and knowledge-sharing. \nFind out more at react-congress.org
URL:https://erdera.org/event/react-congress-2027/
CATEGORIES:ERDERA
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20270607
DTEND;VALUE=DATE:20270611
DTSTAMP:20260901T132033Z
CREATED:20260729T092052Z
LAST-MODIFIED:20260901T132033Z
UID:10000047-1812326400-1812671999@erdera.org
SUMMARY:Open Academy x ERDERA Schools
DESCRIPTION:Join us in Barcelona on 7-10 June 2027 and gain the knowledge\, skills and confidence to strengthen your advocacy work in medicines development and pre-clinical research. The final dates will be announced soon. Open Academy x ERDERA Schools offer a blended learning approach combining these formats. Our programme is developed with expert trainers identified from the research\, regulatory\, industry and patient community to build competence and provide support and advice. \nFind out more here.
URL:https://erdera.org/event/two-open-academy-schools-one-week-of-face-to-face-training-bringing-researchers-and-patient-representatives-together-for-parallel-and-joint-sessions/
CATEGORIES:ERDERA,Patient Public Involvement and Engagement (PPIE),Training and Education
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20270612
DTEND;VALUE=DATE:20270616
DTSTAMP:20261006T154144Z
CREATED:20260618T125124Z
LAST-MODIFIED:20261006T154144Z
UID:10000044-1812758400-1813103999@erdera.org
SUMMARY:European Human Genetics Conference 2027
DESCRIPTION:ESHG 2027 Conference will take place on 12–15 June 2027 in Rotterdam\, The Netherlands. The European Society of Human Genetics is planning the event as a hybrid conference\, allowing participation in person or online through a dedicated virtual conference platform. The official event website is ESHG 2027 Conference website. \nRegistration for ESHG 2027 will open in February 2027. According to the official registration information\, participants can register only for the full conference\, and in-person and online-only participation are handled as separate registration types. Questions about registration can be directed to conference@eshg.org.
URL:https://erdera.org/event/eshg2027/
LOCATION:Rotterdam Ahoy\, Ahoyweg 10\, Rotterdam\, 3084BA\, Netherlands
CATEGORIES:Clinical Research
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END:VEVENT
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