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DTEND;VALUE=DATE:20260501
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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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BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20260225T130000
DTEND;TZID=Europe/Brussels:20260225T140000
DTSTAMP:20260501T210504
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
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260224T183000
DTEND;TZID=UTC:20260224T230000
DTSTAMP:20260501T210504
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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BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20251209T080000
DTEND;TZID=Europe/Brussels:20251211T170000
DTSTAMP:20260501T210504
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;TZID=Europe/Brussels:20251120T080000
DTEND;TZID=Europe/Brussels:20251121T130000
DTSTAMP:20260501T210504
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:
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DTSTART;VALUE=DATE:20251114
DTEND;VALUE=DATE:20251117
DTSTAMP:20260501T210504
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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20251103
DTEND;VALUE=DATE:20251105
DTSTAMP:20260501T210504
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;VALUE=DATE:20250908
DTEND;VALUE=DATE:20250909
DTSTAMP:20260501T210504
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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250605
DTSTAMP:20260501T210504
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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DTSTART;VALUE=DATE:20250304
DTEND;VALUE=DATE:20250305
DTSTAMP:20260501T210504
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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