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DTSTART;TZID=Europe/Brussels:20251209T080000
DTEND;TZID=Europe/Brussels:20251211T170000
DTSTAMP:20251222T141722Z
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:20251222T141705Z
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:20251014T065900Z
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:20251110T140236Z
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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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251103
DTEND;VALUE=DATE:20251105
DTSTAMP:20251009T121651Z
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:20251222T141631Z
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:20251222T141620Z
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:20251009T121719Z
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:20251125T113725Z
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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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250304
DTEND;VALUE=DATE:20250305
DTSTAMP:20251009T121738Z
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:VEVENT
END:VCALENDAR