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DTSTART;VALUE=DATE:20260302
DTEND;VALUE=DATE:20260303
DTSTAMP:20260411T170537
CREATED:20260213T140501Z
LAST-MODIFIED:20260213T140501Z
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20260225T130000
DTEND;TZID=Europe/Brussels:20260225T140000
DTSTAMP:20260411T170537
CREATED:20260126T162223Z
LAST-MODIFIED:20260126T162320Z
UID:10000036-1772024400-1772028000@erdera.org
SUMMARY:Launching a New Guide to EDI/Inclusion in PPI
DESCRIPTION:Do you know that equality\, diversity and inclusion matter in PPI\, but aren’t sure where to start?\nHave you ever wondered whether your PPI approach is genuinely inclusive\, and what you could do to improve it? \nYou are warmly invited to a short webinar to launch a new\, friendly guide to Equality\, Diversity and Inclusion (EDI) in Public and Patient Involvement (PPI). This has been developed by the Rare Disease Clinical Trial Network (RDCTN) and Health Research Charities Ireland (HRCI). \nWhether you are just starting out with PPI or looking to strengthen your approach\, the guide offers clear\, practical actions to help make involvement more inclusive. Co-created with people with lived experience\, family members\, charities and researchers\, it draws on open discussion and shared learning from two dedicated workshops. \nInspired by the diverse rare disease community\, the practical steps outlined in the guide apply across all areas of research. At the launch event\, you’ll hear short reflections from researchers\, patient partners and sector leaders\, and take part in a shared conversation about how to move from intention to action in EDI and PPI. \nIf you’ve ever asked yourself\, “Are we doing this well?” or “How could we do this better?”\, this session is for you. We hope you can join us. \n 
URL:https://erdera.org/event/launching-a-new-guide-to-edi-inclusion-in-ppi/
CATEGORIES:Patient Involvement (PPIE),Training & Education
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/10/download-23-e1760968909969.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260224T183000
DTEND;TZID=UTC:20260224T230000
DTSTAMP:20260411T170537
CREATED:20260201T124743Z
LAST-MODIFIED:20260216T125139Z
UID:10000038-1771957800-1771974000@erdera.org
SUMMARY:EURORDIS Black Pearl Awards 2026
DESCRIPTION:The EURORDIS Black Pearl Awards have been held annually since 2012 to recognise outstanding achievements by people living with a rare disease and those working alongside them — including patient advocates and organisations\, policymakers\, scientists\, companies and others committed to improving lives. From February 2023\, the awards became a fully hybrid event\, enabling participation both in person in Brussels and online. \nFor 2026\, the ceremony will take place on Tuesday\, 24 February at the Cardo Hotel\, Brussels\, with online participation available via EURORDIS’ interactive platform. The awards ceremony will also be translated into 61 languages. \nDate: Tuesday\, 24 February\nCity/venue: Cardo Hotel\, Brussels (plus interactive online platform)\nTimes (local):\n18:30–19:30 Welcome reception and networking\n19:30–22:30 Awards ceremony and seated dinner with live performances (online streaming begins at 20:00)\n22:30–23:00 Coffee\, desserts and networking\nAccessibility: Awards ceremony translated into 61 languages\nRegistration: Register for the Black Pearl Awards\nMore information: EURORDIS Black Pearl Awards
URL:https://erdera.org/event/blackpearlawards2026/
LOCATION:Cardo Hotel\, Brussels\, Belgium
CATEGORIES:Patient Involvement (PPIE)
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260210T170000
DTEND;TZID=UTC:20260210T183000
DTSTAMP:20260411T170537
CREATED:20250605T142523Z
LAST-MODIFIED:20260112T143230Z
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
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/01/8.jpg
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:20260411T170537
CREATED:20250612T142243Z
LAST-MODIFIED:20260112T143250Z
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
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/01/6.jpg
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:20260411T170537
CREATED:20250612T141010Z
LAST-MODIFIED:20260112T143313Z
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
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/01/General-Visual.png
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:20260411T170537
CREATED:20250612T140139Z
LAST-MODIFIED:20260112T143331Z
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:20260411T170537
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
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LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20251211T180000
DTEND;TZID=Europe/Brussels:20251211T193000
DTSTAMP:20260411T170537
CREATED:20251128T141640Z
LAST-MODIFIED:20251222T151735Z
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:20260411T170537
CREATED:20251125T115959Z
LAST-MODIFIED:20251222T151722Z
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:20260411T170537
CREATED:20251013T095036Z
LAST-MODIFIED:20251222T151705Z
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;TZID=Europe/Brussels:20251120T080000
DTEND;TZID=Europe/Brussels:20251121T130000
DTSTAMP:20260411T170537
CREATED:20251023T134321Z
LAST-MODIFIED:20251222T151641Z
UID:10000020-1763625600-1763730000@erdera.org
SUMMARY:Networking of underrepresented countries for the enhancement of rare disease research
DESCRIPTION:ERDERA invites researchers\, clinicians\, patient representatives\, funders and national authorities from underrepresented countries to a two‑morning virtual workshop focused on strengthening collaboration in rare disease research. Click here for more specific information on what underrepresented countries are. \nThe event will present new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion\, networking and capacity development. Outcomes will inform ERDERA guidance for national‑level actions. \nWhy this matters\nPeople living with a rare disease in smaller or less‑resourced countries often face the longest waits for diagnosis and the fewest opportunities to join research and trials. By aligning needs\, sharing good practice and designing realistic support measures\, this workshop aims to accelerate earlier diagnosis and more inclusive research across Europe. \nWhat to expect\n\nEvidence briefing: key findings from ERDERA’s year‑one survey of underrepresented countries\, complemented by insights from related European initiatives (e.g. ERA‑LEARN\, Alliance4Life).\nBest‑practice snapshots: short talks from patients\, clinicians\, researchers and funders\, plus ERDERA workstreams (diagnostics\, clinical trials\, education & training\, National Mirror Groups) on practical measures that work.\nFacilitated parallel sessions: multi‑stakeholder\, multinational groups (using Miro) to identify top challenges on day one and co‑develop actionable solutions on day two across five priorities: policy\, collaboration\, funding\, technical assistance and patient engagement.\nNext steps: synthesis to inform ERDERA guidance for national capacity development in underrepresented countries.\n\nWho should join\n\nParticipants from underrepresented countries: patient organisations\, clinicians\, researchers\, universities\, hospitals\, ministries\, and research‑funding bodies.\nERNs\, SMEs/industry\, and European infrastructures interested in equitable participation and capacity building.\n\nPractical details\n\nDates and time: 20–21 November\, 09:00–13:00 CET each day\nFormat: Online (MS Teams)\nCost: Free; places prioritised for stakeholders from underrepresented countries\nAccessibility: Plain‑language facilitation; collaborative whiteboards; recordings available to registered participants\nRegistration: Register for the workshop\n\nProgramme\n1st day\, November 20th\, 2025\n08:30 – 09:00\nLaunching for on-line participants \n09:00 – 09:15\n\nPresentation of workshop aims and explanation of the foreseen activities\nBirutė Tumienė\, Assoc.Prof.\, MD\, PhD\, Vilnius University\, Faculty of Medicine\, Head of the Division of Clinical Genetics and Genomics\, Centre for Medical Genetics\, Vilnius University Hospital Santaros Klinikos (Lithuania)\n \n09:15 – 09:30\n\nOverview of the survey on the needs of underrepresented countries (UC) in ERDERA T24.1\nBirutė Tumienė\, Assoc.Prof.\, MD\, PhD\, Vilnius University\, Faculty of Medicine\, Head of the Division of Clinical Genetics and Genomics\, Centre for Medical Genetics\, Vilnius University Hospital Santaros Klinikos (Lithuania)\n \n09:30 – 09:45\n\nBridging the Innovation Divide in Europe: The Role of Alliance4Life in Fostering Research Excellence in Central and Eastern Europe\nKarolis Ažukaitis\, Assoc. Prof.\, MD\, PhD\, Vice-Dean for Research at Vilnius University\, Pediatric Nephrologist at Vilnius University Hospital Santaros Klinikos (Lithuania)\n \n09:45 – 10:15\nBest practice examples from: Patients\, clinicians/ researchers: \n· EJPRD project from JTC 2020 ENISNIP\nRobert Jech\, Prof. MD\, PhD\, Head of the Center for interventional treatment of movement disorders\, Department of Neurology\, 1st Faculty of Medicine\, Charles University and General University (Czech Republic) \n· EJPRD project from JTC 2021 SeeMyLife and network support scheme event (European Aniridia Conference 2020)\nArvydas Gelžinis\, MD\, PhD\, Head of the Department of Pediatric Eye Diseases\, The Hospital of Lithuanian University of Health Sciences Kauno klinikos; Irma Bylė\, president of Aniridia Lithuania association (Lithuania) \n10:15 – 12:45\nParallel workshops (supported with MIRO): what are the main challenges for the networking of underrepresented countries and their engagement into rare disease research? \n12:45 – 13:00\nReconvening for the first feedback to plenary \n2nd day\, November 21st\, 2025\n08:30 – 09:00\nLaunching for on-line participants \n09:00 – 10:00\n\nBest practice examples from: Funding agencies: presentation of Lithuanian Research Council;\nŽivilė Ruželė\, PhD\, Advisor at the International Cooperation Unit at Research Council of Lithuania\, ERDERA Networking Support Scheme Secretariat (Lithuania)\n \nERDERA Workstreams\, measures for engagement of underrepresented countries: \n· Diagnostic research workstream (WP6 and WP8)\nProf. Katrin Õunap\, University of Tartu\, Institute of Clinical Medicine & Center of Rare Diseases\, Genetic and Personalized Medicine Clinic\, Tartu University Hospital (Estonia) \n· Education and training (WP20)\nBirutė Tumienė\, Assoc.Prof.\, MD\, PhD\, Vilnius University\, Faculty of Medicine\, Head of the Division of Clinical Genetics and Genomics\, Centre for Medical Genetics\, Vilnius University Hospital Santaros Klinikos (Lithuania) \n· National Mirror Groups (WP23)\nMadara Auzenbaha\, Assoc. Prof. Dr. MD\, lead researcher in Riga Stradins University Scientific Laboratory of Molecular Genetics\, Head of Rare Diseases Coordination Center\, Children’s Clinical University Hospital of Riga (Latvia) \n10:00 – 12:45\nParallel workshops (supported with MIRO): what are the main solutions to enhance networking of underrepresented countries and their engagement into rare disease research? \n12:45 – 13:00\nWrap-up and next steps
URL:https://erdera.org/event/networking-of-underrepresented-countries-for-the-enhancement-of-rare-disease-research/
CATEGORIES:International Alignment,Patient Involvement (PPIE),Training & Education
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LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251114
DTEND;VALUE=DATE:20251117
DTSTAMP:20260411T170537
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)
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251112T080000
DTEND;TZID=UTC:20251112T080000
DTSTAMP:20260411T170537
CREATED:20251110T150039Z
LAST-MODIFIED:20251110T150236Z
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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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251103
DTEND;VALUE=DATE:20251105
DTSTAMP:20260411T170537
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251030T090000
DTEND;TZID=UTC:20251030T232000
DTSTAMP:20260411T170537
CREATED:20250808T125359Z
LAST-MODIFIED:20251010T111046Z
UID:10000011-1761814800-1761866400@erdera.org
SUMMARY:ERDERA’s Open Session - 2nd General Assembly Meeting
DESCRIPTION:ERDERA will mark its 1st anniversary with a stimulating online event open to the entire rare disease community. Leading experts in the field of neurology\, neurometabolic diseases and patient advocacy will take the floor next 30 October\, from 09:00 to 11:20 CET\, bringing both scientific and lived experience to the table. The session is free to attend\, but registration is required. Register here. \nAgenda \n09:00 – 09:10 | Welcome speeches\n• Yvo Roos\, UMC Board Member\, Amsterdam\, The Netherlands\n• Daria Julkowska\, ERDERA Coordinator\, INSERM\, Paris\, France  \n09:10 – 10:00 | Keynote speech (remote)\n• Fanny Mochel\, Director\, Reference Centre for Neurometabolic Diseases\,\nLa Pitié-Salpêtrière Hospital – APHP-Sorbonne University\, Paris\, France  \n10:00 – 10:50 | Keynote speech\n• Bojana Mirosavljevic\, Founder\, Zivot-Life Association\, Belgrade\, Serbia  \n10:50 – 11:20 | One year of ERDERA achievements\n• Daria Julkowska\, ERDERA Coordinator\, INSERM\, Paris\, France  \nInspiring speakers  \n\nFanny Mochel – Professor of Genetics at Sorbonne University\, Mochel leads national reference centres for neurometabolic diseases and leukodystrophies in adults and co-leads the MIND team at the Paris Brain Institute. Her research focuses on brain energy deficiencies\, identifying biomarkers through metabolomics and metabolic imaging\, and developing therapeutic approaches targeting the Krebs cycle. Recently\, she has explored the links between physics and metabolism in brain function and disease. Her work in identifying biomarkers and developing novel treatment strategies reflects ERDERA’s commitment to accelerating scientific discovery and improving patient outcomes. \nBojana Mirosavljević – An internationally recognised rare disease advocate\, scientist\, and patient leader\, Bojana founded the “Life” patient association for children with rare diseases and championed Zoya’s Law\, ensuring early diagnosis and improved care for over 4\,000 patients. With a background in chemistry\, reproductive biology\, and embryology\, she has presented at the European Parliament\, United Nations\, and over 150 global conferences. Currently\, she directs Advocacy Strategy at ICON’s Center for Rare Diseases\, embedding patient perspectives in research and clinical trials worldwide. Her tireless efforts to embed the patient voice into clinical research exemplify ERDERA’s dedication to empowering communities and shaping research that meets real patient needs. \nYvo Roos – Professor of Acute Neurology and dean of the medical faculty at the University of Amsterdam\, Roos pioneered acute stroke care through the founding of the Acute Brain Care Unit in 1996. He has co-led landmark trials including MRCLEAN\, MRCLEAN No-IV\, and DIRECT MT\, and leads large research collaborations such as the CONTRAST consortium and CINTICS. With over 450 publications and multiple prestigious awards\, his work has shaped stroke care and research internationally. His work mirrors ERDERA’s vision of fostering multi-centre\, cross-disciplinary collaborations to translate research into meaningful clinical impact. \nDaria Julkowska – Scientific Coordinator of the European Rare Disease Research Alliance (ERDERA) and Assistant Director of the Thematic Institute for Genetics\, Genomics & Bioinformatics at INSERM\, with over 15 years of experience in research and management. Julkowska has developed and implemented collaborations between European research networks\, infrastructures\, and patient organisations. With a PhD in Molecular Biology\, postdoctoral experience in cellular biology\, and an MSc in Management of Research\, she combines scientific expertise with strategic coordination to advance rare disease research across Europe. \n\nRegister now! \nDon’t miss the chance to be part of an inspiring occasion at the ERDERA Open Session on 30 October 2025\, from 09:00 to 11:20 CET.      \nThe session is free to attend\, but registration is required. You can register to attend the open session here.
URL:https://erdera.org/event/erderas-open-session-nd-general-assembly-meeting/
CATEGORIES:ERDERA
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251027
DTEND;VALUE=DATE:20251029
DTSTAMP:20260411T170537
CREATED:20250801T094706Z
LAST-MODIFIED:20251222T151631Z
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:20260411T170538
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251009
DTEND;VALUE=DATE:20251012
DTSTAMP:20260411T170538
CREATED:20250813T152319Z
LAST-MODIFIED:20251009T141719Z
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:20250908
DTEND;VALUE=DATE:20250909
DTSTAMP:20260411T170538
CREATED:20250725T095359Z
LAST-MODIFIED:20251009T141727Z
UID:10000010-1757289600-1757375999@erdera.org
SUMMARY:Applications for Open Academy Schools 2026
DESCRIPTION:From 25–28 May 2026\, Barcelona will host the next EURORDIS Open Academy Schools. Applications for the Medicines Research & Development School and the Scientific Innovation & Translation School open on 8 September 2025. Subscribe to the Open Academy and EURORDIS newsletters to receive the link as soon as the call goes live. \nWhat awaits in Barcelona\nParticipants will move between School-specific sessions and joint workshops on patient engagement and leadership. The blended design—e-learning modules\, pre-training webinars and four intensive face-to-face days—also features:\n• an off-site visit to a Barcelona research centre or hospital\n• extensive contact time with faculty and EURORDIS staff\n• structured opportunities to exchange experience with fellow advocates and researchers \nLast year’s edition achieved “high engagement\, deeper impact”\, as highlighted in ERDERA’s 2025 review article (read it here). Alumni have since helped form Community Advisory Boards\, co-designed funded research proposals and served as patient experts at the European Medicines Agency. \nData\, Ethics & AI: dates still to be confirmed\nA second run of “Navigating Rare Disease Research: Data\, Ethics and AI in Europe” is planned for 2026. Unlike last year\, the call for applications will not be issued in September; dates will be announced once the team finalises a new hybrid format that combines six to eight hours of online sessions over six months with one in-person training day. Stay tuned via the newsletters. \nFunding and access\nWith support from the European Rare Diseases Research Alliance (ERDERA)\, eighty places in Barcelona are fully funded. ERDERA covers course fees\, three nights’ accommodation (including a registered carer where needed) and meals during training hours.
URL:https://erdera.org/event/applications-for-open-academy-schools-2026/
CATEGORIES:Patient Involvement (PPIE),Training & Education
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250605
DTSTAMP:20260411T170538
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)
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250304
DTEND;VALUE=DATE:20250305
DTSTAMP:20260411T170538
CREATED:20250225T093107Z
LAST-MODIFIED:20251009T141738Z
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:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240926T080000
DTEND;TZID=UTC:20240926T170000
DTSTAMP:20260411T170538
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240828
DTEND;VALUE=DATE:20240829
DTSTAMP:20260411T170538
CREATED:20240625T071706Z
LAST-MODIFIED:20251009T141749Z
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
END:VEVENT
END:VCALENDAR