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BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20260528T130000
DTEND;TZID=Europe/Helsinki:20260528T140000
DTSTAMP:20260602T064250
CREATED:20260513T075424Z
LAST-MODIFIED:20260526T082416Z
UID:10000042-1779973200-1779976800@erdera.org
SUMMARY:Webinar: The ERDERA Diagnostic Research Workstream – An overview
DESCRIPTION:Join ERDERA for an introductory webinar on the Diagnostic Research Workstream\, presented by Holm Graessner. \nThis opening session will explain what the workstream does\, how it is organised\, and how interested clinicians\, researchers and expert groups can contribute. The webinar will introduce the workstream’s core activities and processes\, including data sharing\, systematic diagnostic reanalysis\, advanced diagnostic pipelines\, and innovation in genomic and multi-omics technologies. \nThe session is open to ERN healthcare professionals\, geneticists\, clinicians\, JTC beneficiaries and anyone interested in diagnostic research. \nYou may register here. \nMore information: ERDERA Diagnostics page
URL:https://erdera.org/event/webinar-the-erdera-diagnostic-research-workstream-an-overview/
CATEGORIES:Clinical Research,International Alignment
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LOCATION:https://events.teams.microsoft.com/event/52bed732-7d24-4fc0-ae1a-d4741d763328@b89cc6a7-57a7-4137-8224-69e7ea0b1c55
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260429
DTEND;VALUE=DATE:20260501
DTSTAMP:20260602T064251
CREATED:20260223T113918Z
LAST-MODIFIED:20260424T114357Z
UID:10000039-1777420800-1777593599@erdera.org
SUMMARY:Undiagnosed Day 2026 | Where diagnosis becomes hope: The power of collaboration and technology in rare diseases
DESCRIPTION:April 29-30\, 2026 | Gdansk\, Poland\nUndiagnosed Day 2026 is a two‑day\, clinician‑led meeting in Gdansk bringing together specialist clinicians\, clinical geneticists and invited experts to support phenotype‑led diagnosis through live case discussion\, shared clinical reasoning and practical exchange. \nThe event is organised by the European Rare Diseases Research Alliance (ERDERA); the Wilhelm Foundation; the Medical University of Gdansk (GUMed); and the University Clinical Centre in Gdansk (UCK). \nAlthough it draws on the same collaborative spirit as international Undiagnosed Hackathons\, where patients who have previously failed to receive a diagnosis through standard genetic testing are re-analysed using more advanced techniques\, the Gdansk event is designed around specialist clinical assessment and multidisciplinary discussion with patients and families present. \nWhat to expect\nThe meeting will focus on practical approaches to phenotyping and diagnosis in undiagnosed conditions\, including how to define next steps when a diagnosis remains uncertain\, and how to strengthen pathways and collaboration around undiagnosed care. \nRegister here. \n  \n\n \nPreliminary Programme\n \nWednesday April 29th\, 2026 – CLOSED EVENT\nThis session is not open to the public. \n  \n \nThursday April 30th\, 2026 – OPEN EVENT\nFormat: In‑person – day one closed round table; day two open conference\nVenue: University Clinical Centre in Gdańsk (UCK)\, Centre of Invasive Medicine (CMI)\, Auditorium im. prof. Zdzisława Kieturakisa (nr 2/DD/04). Accessibility map to the venue here. \nTimes are in CEST. \nRegistration for Day 2 is available here.\n \n \n09:00–09:30 – Opening\n\nProf. Tomasz Stefaniak – Director\, UCK Hospital\, Gdansk\nProf. Michał Markuszewski – Rector\, Medical University of Gdansk\nProf. Jolanta Wierzba – Center for Rare Diseases\, Gdansk\nProf. Maria Mazurkiewicz‑Bełdzińska – Department of Developmental Neurology\nMs. Maja Bartoszewicz‑Moritz – Center for Rare Diseases – Patient Council Representative\, Gdansk\n\n \n09:30–09:45 – Introduction\n\nMs. Helene Cederroth – Wilhelm Foundation\nDr. Daria Julkowska  – ERDERA\n\n \n09:45–11:15 – Session I: Modern diagnostics in undiagnosed diseases\nModern diagnostics in undiagnosed diseases brings together clinical genetics\, international research leadership and health‑system perspectives to show how the diagnostic pathway is evolving – from careful phenotyping and functional genomics to scalable data platforms and cross‑border collaboration. \nSpeakers will highlight the global IRDiRC view on accelerating answers\, a practical diagnostic pathway using Cornelia de Lange syndrome as an example\, the current rare‑disease landscape in Poland\, emerging platforms supporting undiagnosed rare conditions (URC) and diagnostic capability‑building\, and how improved diagnostics translate into real‑world care options for patients and families. \nSession Chairs: Prof. Maurizio Scarpa; Prof. Krzysztof Szczałuba \n\nDr. David Pearce – “From Undiagnosed to Rare”; Chair\, International Rare Disease Research Consortium (IRDiRC)\nProf. Frank Kaiser – Diagnostic Pathway of Cornelia de Lange Syndrome; Institute of Human Genetics\, Universitätsklinikum Essen (AöR)\, Essen\, Germany\nProf. Monika Gos – Rare disease situation in Poland; Institute of Mother and Child\, Warsaw\, Poland\nProf. Katrin Ounap – Data platforms for URC and diagnostic capabilities; ERN ITHACA / ERDERA; University of Tartu\, Estonia\nProf. Siddharth Banka – Diagnostics and care possibilities; Manchester Rare Conditions Centre\n\n \n11:15–11:45 – Coffee break\n \n11:45–12:45 – Session II: Clinical cases with and without diagnosis\nClinical cases with and without diagnosis is a case‑based session illustrating the real‑life diagnostic journey in rare and undiagnosed conditions – what enables a breakthrough\, what still blocks answers\, and how precision medicine can (and cannot yet) change management. \nFollowing an introduction to precision medicine\, four cases will be discussed – two solved (each reflecting a long diagnostic odyssey) and two unsolved – to highlight practical decision points\, multidisciplinary collaboration and the added value of advanced genomics\, re‑analysis and data sharing. The session is designed to be interactive\, focusing on transferable lessons for clinicians and the patient community: how to shorten time to diagnosis\, avoid missed opportunities and define next steps when a diagnosis remains elusive. \nSession Chairs: Ms. Shirlene Badger; Dr. David Pearce \n\nProf. Saumya Jamuar – Introduction to precision medicine; Senior Consultant in the Genetics Service at KK Women’s and Children’s Hospital\nProf. Hayane Akopyan – Case report; National Academy of Medical Sciences of Ukraine\, Kyiv\, Ukraine\nDr. Aleksandra Bodetko – Case report; Department and Clinic of Pediatrics\, Endocrinology\, Diabetology and Metabolic Diseases\, Medical University of Wroclaw\, Poland\nDr. Agnieszka Madej‑Pilarczyk – Case report; Department of Medical Genetics\, The Children’s Memorial Health Institute\, Warsaw\, Poland\nProf. Andreas Roos – Adjunct Professor (University of Ottawa); Abteilung für Neuropädiatrie\,\nUniversitätsklinikum Essen\, Germany\nMs. Kornelia Polat – Case report; Student Scientific Circle “Rare Diseases”\, Medical University of Gdansk\, Poland\n\n \n12:45–13:45 – Lunch\n \n13:45–15:15 – Session III: What to do when there is no diagnosis\nWhat to do when there is no diagnosis focuses on practical\, ethical and system‑level actions when a diagnosis is delayed or never achieved. The session connects clinical management (how to organise comprehensive\, coordinated care based on needs rather than labels)\, international practice and patient–family partnership (how “science projects” and collaborative pathways can be pursued responsibly). \nIt will also address privacy and data governance while searching for answers\, and the caregiver burden and quality of life – with and without a confirmed diagnosis – so that support\, communication and services can be planned proactively. The overall aim is to equip participants with a “diagnosis‑agnostic” approach: clear next steps for care\, research participation and family support\, even when certainty remains out of reach. \nSession Chairs: Prof. Frank Kaiser; Dr. Tomasz Grybek \n\nProf. Jan Domaradzki – The Diagnostic Odyssey and Beyond: Caregiver Burden and Quality of Life With and Without Diagnosis; Poznan University of Medical Sciences\, Poznan\, Poland\nProf. Jolanta Wierzba / Dr. Karolina Śledzińska – Diagnosed – and what’s next; comprehensive and coordinated care; Center for Rare Diseases\, Gdansk\, Poland\nProf. Gareth Baynam – Di-Agnostic Rare Care – ONLINE; Rare Care Centre\, Perth Children’s Hospital\, Australia\nMs. Shirlene Badger – When is a diagnosis a diagnosis? Co-creating solutions in patient advocacy; Global Patient Advocacy Lead\, Illumina\nMs. Mary Jane Dykeman – Children’s Privacy: Data Sharing as Possibility not Peril; INQ Law | Health AI\, De‑ID & Applied Innovation | EpiSign Chai\n\n \n15:15–15:45 – Coffee break\n \n15:45–17:15 – Session IV: International cooperation and health data management\nInternational cooperation and health data management explores how cross‑border collaboration\, shared registries and EU‑level infrastructures are reshaping the rare and undiagnosed disease landscape – making data findable and usable\, accelerating diagnostics and enabling more consistent care across countries. \nThe session connects perspectives from ERDERA’s undiagnosed community\, EU coordination and long‑term strategy for rare diseases\, lessons learned from flagship initiatives such as SOLVE‑RD and the role of ERNs. Speakers will also highlight advances in paediatric neurology diagnostics in Poland\, showing how international frameworks translate into real clinical capacity and patient benefit – while keeping ethical boundaries\, privacy and trust at the centre. \nSession Chairs: Prof. Monika Gos; Dr. Karolina Śledzińska \n\nProf. Laima Ambrozaityte – [Speech title tbc]; Dept. of Human and Medical Genetics\, Institute of Biomedical Sciences\, Human Genome and Regulome Research Group\, Translational Health Research Institute\, Faculty of Medicine\, Vilnius University – ERDERA Undiagnosed group\nProf. Maurizio Scarpa – Coordinator\, European Reference Network For Hereditary Metabolic Diseases (MetabERN); Director\, Regional Coordinating\, Center for Rare Diseases\, Udine University Hospital\, Udine\, Italy\nDr. Holm Graessner – When technology meets ethics – the limits and future of transforming diagnosis into therapy for rare diseases; Coordinator of ERN‑RND (Tübingen) and the SOLVE‑RD project “Solving Unsolved Rare Diseases”\nProf. Maria Mazurkiewicz‑Bełdzińska – Advances in diagnostics of paediatric neurology in Poland\n\n \n17:15–17:45 – Closing remarks\n \nContact\nFor practical questions\, please write to global2026@undiagnosed-day.org.
URL:https://erdera.org/event/undiagnosed-day-2026/
LOCATION:80-214 Gdańsk\, M. Smoluchowskiego 17 Centrum Medycyny Inwazyjnej (CMI)\, 80-214 Gdańsk\, M. Smoluchowskiego 17 Centrum Medycyny Inwazyjnej (CMI)
CATEGORIES:Clinical Research,Data Hub,ERDERA,Patient Involvement (PPIE)
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260302
DTEND;VALUE=DATE:20260303
DTSTAMP:20260602T064251
CREATED:20260213T130501Z
LAST-MODIFIED:20260213T130501Z
UID:10000037-1772409600-1772495999@erdera.org
SUMMARY:Webinar on the use of platform technologies in the non-clinical and clinical domains
DESCRIPTION:The proposal for the EU pharmaceutical legislation introduces the concepts of platform technologies and platform marketing authorisation. The European Medicines Agency organises a webinar bringing together regulators and medicine developers to discuss the use of platform technologies beyond the quality and manufacturing domains. We invite interested parties to share insights and case studies on the use of non-clinical and clinical platform technologies and platform marketing authorisation (ITFsecretariat@ema.europa.eu). \nThe main objectives of the webinar are: \n•    Clarifying the current EU legal framework for the development and marketing of individualised therapies (n=1) and for the use of prior knowledge in Marketing Authorisation dossiers;\n•    Presenting case studies on the use of platform technologies in the non-clinical and clinical domains and exploring their possible applications and values;\n•    Discussing the challenges and identify opportunities related to the use of platform approaches;\n•    Facilitating the implementation of the EU pharmaceutical legislation provisions on platform technologies and platform marketing authorisation.
URL:https://erdera.org/event/webinar-on-the-use-of-platform-technologies-in-the-non-clinical-and-clinical-domains/
CATEGORIES:Clinical Research
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/02/Captura-de-pantalla-2026-02-13-150422.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260210T170000
DTEND;TZID=UTC:20260210T183000
DTSTAMP:20260602T064251
CREATED:20250605T122523Z
LAST-MODIFIED:20260112T133230Z
UID:10000035-1770742800-1770748200@erdera.org
SUMMARY:Webinar: Enhancing patient-centricity in Rare Disease Clinical Trials
DESCRIPTION:The final webinar from RealiseD project focuses on what truly matters: the patient. Rare disease trials often struggle to capture outcomes that reflect patient priorities but RealiseD is working to change that. Rudradev Sengupta\, Senior Trial Design Lead at One2Treat\, will present an approach that embeds patient voices into every stage of trial design and analysis. By using hierarchical endpoints and net treatment benefit\, this framework balances benefits and risks in alignment with patient preferences\, enabling transparent discussions among stakeholders and ensuring that success is defined by what matters most to patients. This is a vital conversation for anyone committed to making clinical research more humane and impactful.
URL:https://erdera.org/event/enhancing-patient-centricity-in-rare-disease-clinical-trials/
CATEGORIES:Clinical Research,Training & Education
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LOCATION:https://erdera.org/event/enhancing-patient-centricity-in-rare-disease-clinical-trials/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260203T170000
DTEND;TZID=UTC:20260203T183000
DTSTAMP:20260602T064251
CREATED:20250612T122243Z
LAST-MODIFIED:20260112T133250Z
UID:10000034-1770138000-1770143400@erdera.org
SUMMARY:Webinar: Single arm\, RCT or something in between – how to enrich clinical trial design and analysis in rare diseases
DESCRIPTION:Single-arm trials remain a cornerstone of rare disease research\, but their limitations and complexities cannot be ignored. In the third webinar\, experts Yulia Dyachkova (Merck Healthcare)\, Jenny Devenport (Roche)\, Cornelia Dunger-Baldauf (Novartis) abd Guillaume Canaud will lead a deep dive into the evolving role of SATs in drug development. The discussion will cover regulatory and HTA perspectives\, review case studies of success and failure\, and explore advanced statistical methods designed to optimise trial design. This session is not just about understanding the current landscape—it is about shaping the future of evidence generation for rare and ultra-rare diseases.
URL:https://erdera.org/event/webinar-single-arm-rct-or-something-in-between-how-to-enrich-clinical-trial-design-and-analysis-in-rare-diseases/
CATEGORIES:Clinical Research,Training & Education
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LOCATION:https://erdera.org/event/webinar-single-arm-rct-or-something-in-between-how-to-enrich-clinical-trial-design-and-analysis-in-rare-diseases/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260120T170000
DTEND;TZID=UTC:20260120T183000
DTSTAMP:20260602T064251
CREATED:20250612T121010Z
LAST-MODIFIED:20260112T133313Z
UID:10000033-1768928400-1768933800@erdera.org
SUMMARY:Webinar: Evidence Assessment Framework – The need for a mindset shift for developers\, regulators and HTAs
DESCRIPTION:The second webinar from realiseD project turns the spotlight on one of the most critical issues in rare disease research: the generation and assessment of evidence. François Meyer\, a leading consultant in health technology assessment\, will examine why current frameworks often fail to deliver predictable and aligned outcomes\, resulting in delays and inequalities in patient access. The session will explore the global and European initiatives aimed at addressing these shortcomings and present the RealiseD consortium’s efforts to advance scientific and operational solutions. More importantly\, it will advocate for a fundamental shift in mindset—one that embraces flexibility and innovation in the way evidence is generated\, interpreted\, and assessed.
URL:https://erdera.org/event/evidence-assessment-framework-the-need-for-a-mindset-shift-for-developers-regulators-and-htas/
CATEGORIES:Clinical Research,Training & Education
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LOCATION:https://erdera.org/event/evidence-assessment-framework-the-need-for-a-mindset-shift-for-developers-regulators-and-htas/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260113T170000
DTEND;TZID=UTC:20260113T183000
DTSTAMP:20260602T064251
CREATED:20250612T120139Z
LAST-MODIFIED:20260112T133331Z
UID:10000031-1768323600-1768329000@erdera.org
SUMMARY:Webinar: Realising clinical trials in ultra‑rare diseases
DESCRIPTION:The opening webinar sets the stage for the RealiseD initiative\, introducing its vision and methodology for tackling the unique challenges of ultra-rare disease trials. Professor Dieter Hilgers of Sigmund Freud University will guide participants through the project’s objectives and structure\, highlighting how RealiseD aims to foster collaboration from the earliest stages of research. The discussion will address the obstacles that have long hindered progress in this area and propose practical solutions\, while also establishing shared principles for interpreting data in ultra-rare conditions. This is an opportunity to be part of a transformative movement that seeks to redefine what is possible in rare disease research.
URL:https://erdera.org/event/webinar-realising-clinical-trials-in-ultra-rare-diseases/
CATEGORIES:Clinical Research,Training & Education
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/01/RealiseD-Visuals-Webinars-2026-3.png
LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251216T150000
DTEND;TZID=UTC:20251216T170000
DTSTAMP:20260602T064251
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:20251211T180000
DTEND;TZID=Europe/Brussels:20251211T193000
DTSTAMP:20260602T064251
CREATED:20251128T131640Z
LAST-MODIFIED:20251222T141735Z
UID:10000026-1765476000-1765481400@erdera.org
SUMMARY:From Vision to Reality: 6 Years of RDCA-DAP – Driving Drug Development Solutions and Innovations in Data Sharing
DESCRIPTION:Over the past six years\, the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP) has grown from a bold concept into a mature\, global resource powering rare disease drug development. This webinar will present key achievements of RDCA-DAP in building a multi-disease rare disease database\, fostering a collaborative data ecosystem through partnerships with external platforms\, and providing open data and analytics tools to support regulators\, industry\, researchers and patient communities. \nSpeakers will share concrete\, data-driven examples from RDCA-DAP task forces – small\, focused public–private partnerships designed to address unmet needs\, streamline development efforts and enable regulatory-grade solutions for rare diseases. The session will conclude with a multi-stakeholder panel discussion on why data sharing remains critically important and how it can “move mountains” for people living with rare diseases. \nWe are pleased to announce that the panel will include Federico Álvarez\, co-leader of ERDERA Work Package 14 (Data Readiness Services)\, who will bring EU/ERDERA perspectives on building a FAIR\, regulatory-aligned rare disease data and analytics ecosystem. \nThis webinar is particularly relevant for ERDERA partners involved in the Clinical Research Network\, the Data Services Hub\, and the Expertise Services Hub\, and for all colleagues working on data readiness and reuse for cure acceleration. \nRegistration: https://c-path-org.zoom.us/webinar/register/WN_q316ecsMQ4Km2pBQPyqzeA
URL:https://erdera.org/event/from-vision-to-reality-6-years-of-rdca-dap-driving-drug-development-solutions-and-innovations-in-data-sharing/
CATEGORIES:Clinical Research,Data Hub,ERDERA Accelerator
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20251209T080000
DTEND;TZID=Europe/Brussels:20251211T170000
DTSTAMP:20260602T064251
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)
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251209
DTEND;VALUE=DATE:20251211
DTSTAMP:20260602T064251
CREATED:20251013T075036Z
LAST-MODIFIED:20251222T141705Z
UID:10000018-1765238400-1765411199@erdera.org
SUMMARY:2nd International Conference on Clinical Research Networks: Connected for impact
DESCRIPTION:ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases\, co-organised in collaboration with Rare Disease International and the International Rare Diseases Research Consortium (IRDiRC). \nDetails: \nDate: 9–10 December 2025 \nFormat: Hybrid – online and in-person participation available \nVenue: Marsilius College\, Heidelberg\, Germany \nView the speaker bios here\n  \nProgramme\nTimes are in CET. \nTuesday December 9th\, 2025\n12.00 – 13.00 – Light lunch reception\n13.00 – 14.00 – Plenary session: Opening Session – Setting the scene\n\nDavid Pearce\, International Rare Diseases Research Consortium (IRDiRC) Professor Department Pediatrics\, Sanford School of Medicine of the University of South Dakota (United States of America)\nAlexandra Heumber Perry\, Chief Executive Officer\, Rare Diseases International (France)\nBaptiste Eluard\, Senior Scientific Project Manager at the European Rare Disease Research Alliance (ERDERA)\n\n14.00 – 15.30 – Plenary session 1: Global efforts in Real World Evidence (RWE) and data collection\nSession Chair: Franz Schaefer\, Hospital Franz Schaefer\, MD\, Professor of Pediatrics Head\, Division of Pediatric Nephrology\, Heidelberg University Coordinator\, European Reference Network for Rare Kidney Disease (ERKNet) Co-Lead\, Clinical Research Network of the European Rare Disease Research Alliance (ERDERA) \n\nCarla Jonker\, Scientific Administrator\, Real World Evidence workstream (RWE); Data Analytics and Methods Task Force (TDA); European Medicines Agency (EMA) (The Netherlands)\nRamona Walls\, Data Collaboration Center Director\, C-Path (United States of America)\nProf. Thomas Klockgether\, German Center for Neurodegenerative Diseases (DZNE) (Germany)\nPat Furlong\, President\, Parent Project Muscular Dystrophy (United States of America)\n\n15.30 – 16.00 – Coffee and networking break\n16.00 – 18.00 – Plenary session 2: New approaches in diagnostics & clinical research\nSession Chair: Yanis Mimouni (Associate Director\, Regulatory Science\, C-Path) \n\nTudor Groza\, Co-Lead AI and Data Science\, Maternal and Child Health Research Institute\, KK Women’s’ and Children’s Hospital Singapore\, Principal Scientist\, Bioinformatics Institute\, A*STAR (Singapore)\nSergi Aguiló Castillo\, RadboudUMC (The Netherlands)\nAlexander Hoischen\, Radboudumc Nijmegen (The Netherlands)\nCécile Ollivier\, Vice President Global Affairs\, Critical Path Institute (The Netherlands)\nDustin O’Dell\, Cofounder & CEO\, SymetryML Inc and Decentra Health (United States of America)\nChris Hendriksz\, A Rare Cause (South Africa)\nYong Chen\, Ph.D.\, FASA\, FACMI\, Professor of Biostatistics\, Director of the Penn Computing\, Inference and Learning lab\, Founding Director of the Center for Health AI and Synthesis of Evidence (CHASE)\, Perelman School of Medicine at the University of Pennsylvania (USA)\n\n18.30 – 20.30 – Networking reception\nWednesday December 10th\, 2025\n9.00 – 11.00 – Parallel workshops\nPARALLEL WORKSHOP 1: Learnings from Low and Middle-Income Countries: Ensuring Representation in Clinical Research Data and Registries \nSession Chairs: Daria Julkowska\, Scientific coordinator of the European Rare Diseases Research Alliance (ERDERA) and Assistant Director of the Thematic Institute for Genetics\, Genomics & Bioinformatics (IT GGB) at INSERM\,\nMonica Drum\, Senior Global Programmes Manager\, Rare Diseases International (RDI) \n\nChris Hendriksz\, A Rare Cause (United Kingdom / South Africa)\nRoberto Giugliani\, Professor of Genetics at the Federal University of Rio Grande do Sul (UFRGS)\, Chief of the Clinical Research Group in Clinical Genetics at Hospital de Clinicas de Porto Alegre (HCPA)\, and Executive Director of Casa dos Raros\, in Porto Alegre (Brazil)\nRobin Sarfati\, CTO at Tekkare (France)\nProf. Mohamed Hassany\, Assistant Minister of Health for Projects and Public Health Initiatives Professional Affiliation: Ministry of Health and Population (Egypt)\n\nPARALLEL WORKSHOP 2: Rules of engagement in multi-stakeholder pre-competitive environments \nSession Chairs: Samantha Parker Patient Engagement Lead Rare Diseases at Italfarmaco\, Vice-Chair IRDiRC;\nHeidrun Hildebrand\, Alliance Manager Pediatric Development; Bayer Pharmaceuticals \n\nRicardo Fernandes\, Chief Medical Officer at conect4children-stichting\nCécile Ollivier\, Vice President Global Affairs\, Critical Path Institute (The Netherlands)\nBegoña Nafria Escalera\, Head of Patient Engagement in Research Area\, Paediatric Cancer Center Barcelona – PCCB\, Institut de Recerca Sant Joan de Déu (Spain)\nVolker Straub\, Harold Macmillan Professor of Medicine; Director\, The John Walton Muscular Dystrophy Research Centre; Deputy Dean\, Translational and Clinical Research Institute\, Faculty of Medical Sciences\nNewcastle University and Newcastle Hospitals NHS Foundation Trust (United Kingdom)\nKristina An Haack\, MD\, Senior Project Head Rare Development\, Inherited NeuroMetabolic Diseases\, Pediatric Network Lead (France)\nVictoria Hedley\, Together4Rare (United Kingdom)\n\n11.00 – 11.30 – Coffee and networking break\n11.30 – 12.30 – Plenary session 3: Reporting back from parallel workshops & discussion\n\nMonica Drum\, Senior Global Programmes Manager\, Rare Diseases International (France)\nDaria Julkowska\, Scientific coordinator of the European Rare Diseases Research Alliance (ERDERA) and Assistant Director of the Thematic Institute for Genetics\, Genomics & Bioinformatics (IT GGB) at INSERM (France)\nHeidrun Hildebrand\, Alliance Manager Pediatric Development; Bayer Pharmaceuticals (Germany)\n\n12.30 – 13.30 – Lunch break\n13.30 – 15.00 – Plenary session 4: Global trials\, local impact: Empowering access and engagement in international clinical research\, role of patients and broad partnerships\nSession Chair: Alexandra Heumber Perry\, Chief Executive Officer\, Rare Diseases International (France) \n\nDr. Sudheendra Rao\, N R\, Scientific Advisor\, Organization for Rare Diseases India\nChristine Mutena\, Co-Founder at Rare Disorders Kenya\nBegoña Nafria Escalera\, Head – Patient Engagement in Research Area\, Pediatric Cancer Center Barcelona\, Sant Joan de Deu SJD\, Spain; Conect4Children Stichting\nDr Roberto Giugliani\, Professor of Genetics at the Federal University of Rio Grande do Sul (UFRGS)\, Chief of the Clinical Research Group in Clinical Genetics at Hospital de Clinicas de Porto Alegre (HCPA)\, and Executive Director of Casa dos Raros\, in Porto Alegre (Brazil)\n\n15.00 – 15.30 – Coffee and networking break\n15.30 – 17.00 – Plenary session 5: Global networks and models of care in high income and LMIC – The Duchenne experience\nSession Chair: David Pearce\, International Rare Diseases Research Consortium (IRDiRC) Professor Department Pediatrics\, Sanford School of Medicine of the University of South Dakota (United States of America) \n\nAnna Thetford\, Registered Nurse; Program Director (Clinical)\, Rare Care Centre\, Perth\, Western (Australia)\nKarolína Podolská\, MD\, Internal physician and coordinator of Center for adults with muscular dystrophy\, General University Hospital in Prague\, Czech Republic\, Accredited Duchenne Centers Program Manager\nRicardo Fernandes\, Chief Medical Officer at conect4children-stichting\nKarolina Śledzińska\, MD\, PhD\, Pediatrician\, Clinical Geneticist\, Department of Pediatrics\, Hematology and Oncology\, Medical University of Gdansk\, Poland – ONLINE\n\n17.00 – 17.30 – Closing of the conference
URL:https://erdera.org/event/international-conference-on-clinical-research-networks/
CATEGORIES:Clinical Research
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251114
DTEND;VALUE=DATE:20251117
DTSTAMP:20260602T064251
CREATED:20251014T065900Z
LAST-MODIFIED:20251014T065900Z
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)
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251112T080000
DTEND;TZID=UTC:20251112T080000
DTSTAMP:20260602T064251
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20251103
DTEND;VALUE=DATE:20251105
DTSTAMP:20260602T064251
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251027
DTEND;VALUE=DATE:20251029
DTSTAMP:20260602T064251
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251014T133000
DTEND;TZID=UTC:20251014T173000
DTSTAMP:20260602T064251
CREATED:20251013T060932Z
LAST-MODIFIED:20251222T141620Z
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251009
DTEND;VALUE=DATE:20251012
DTSTAMP:20260602T064251
CREATED:20250813T132319Z
LAST-MODIFIED:20251009T121719Z
UID:10000012-1759968000-1760227199@erdera.org
SUMMARY:15th Balkan congress of human genetics and 3rd Alpe Adria meeting of human genetics
DESCRIPTION:The 15th Balkan Congress of Human Genetics and the 3rd Alpe Adria Meeting of Human Genetics will take place from 9–11 October 2025 at the Rikli Balance Hotel\, Bled\, Slovenia. This joint event will gather leading regional and European experts to present the latest advances in human genetics\, with a focus on cutting-edge sequencing technologies\, predictive genomics\, and harmonisation of practice guidelines across Europe. \nThe scientific programme will feature invited lectures\, short presentations\, and posters covering a wide range of fields\, including genomic medicine\, rare diseases\, pharmacogenomics\, oncogenetics\, reproductive genetics\, population genetics\, and multifactorial disorders. \nBringing together excellence in research and practice\, the congress aims to foster collaboration\, knowledge exchange\, and progress in contemporary medical genetics. \nView the programme here.
URL:https://erdera.org/event/15th-balkan-congress-of-human-genetics-and-3rd-alpe-adria-meeting-of-human-genetics/
LOCATION:Rikli Balance Hotel Bled\, Slovenia\, Rikli Balance Hotel\, Bled\, Slovenia
CATEGORIES:Clinical Research,ERDERA
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250605
DTSTAMP:20260602T064251
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)
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250304
DTEND;VALUE=DATE:20250305
DTSTAMP:20260602T064251
CREATED:20250225T083107Z
LAST-MODIFIED:20251009T121738Z
UID:10000004-1741046400-1741132799@erdera.org
SUMMARY:RE(ACT) Congress and IRDiRC Conference 2025
DESCRIPTION:Welcome to the pinnacle event in rare diseases research – the RE(ACT) Congress and IRDiRC Conference 2025\, held jointly by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC). From March 5th to 7th\, we gathered in the vibrant city of Brussels for an unparalleled exchange of knowledge and ideas. \nContinuing the legacy of the esteemed IRDiRC Conference series (now in its 6th edition) and the RE(ACT) Congress series (celebrating its 8th edition)\, this convergence served as a beacon for scientific innovation. Our assembly comprised visionary leaders\, distinguished experts\, and emerging talents from diverse scientific domains\, converging to unveil groundbreaking research\, foster dialogue\, and shape policies crucial to rare disease research. \nIn a testament to inclusivity and collaboration\, patients and advocacy organizations dedicated to research also graced our gathering\, enriching discussions with invaluable firsthand experiences and perspectives. \nhttps://erdera.org/wp-content/uploads/2025/08/REACT-short-promo-video.mp4\nSince its inception in 2012\, the RE(ACT) Congress\, pioneered by the BLACKSWAN Foundation\, has catalyzed scientific collaboration and advancement in the realm of rare and orphan diseases. Meanwhile\, IRDiRC\, established in April 2011 under the auspices of the European Commission and the US National Institutes of Health\, has been pivotal in galvanizing global cooperation among researchers\, funders\, and patient advocacy groups within a multinational framework. \nThis joint venture of the 8th RE(ACT) Congress and the 6th IRDiRC Conference\, in partnership with the European Rare Diseases Research Alliance (ERDERA)\, Eurordis (the European Alliance of Patient Organizations)\, and RDI—Rare Diseases International (the global alliance of people living with rare diseases)\, symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge. \nTogether\, we embarked on a journey of discovery\, collaboration\, and hope\, setting new benchmarks in the relentless pursuit of solutions for people with rare diseases. Welcome to a convergence where every voice matters and every contribution propels us closer to a future where rare diseases are not barriers but conquerable frontiers.
URL:https://erdera.org/event/react-congress-and-irdirc-conference-2025-2/
CATEGORIES:Clinical Research,International Alignment,Patient Involvement (PPIE)
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END:VCALENDAR