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X-WR-CALDESC:Events for ERDERA
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DTSTART;VALUE=DATE:20260429
DTEND;VALUE=DATE:20260501
DTSTAMP:20260422T221600
CREATED:20260223T123918Z
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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\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 – 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 – Diagnosed – and what’s next; comprehensive and coordinated care – ONLINE; Rare Care Centre\, Perth Children’s Hospital\, Australia\nMs. Shirlene Badger – “Science projects”: ethics of patient engagement and collaboration\nMs. Mary Jane Dykeman – Protecting privacy while pursuing answers for undiagnosed children; 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;VALUE=DATE:20260609
DTEND;VALUE=DATE:20260623
DTSTAMP:20260422T221600
CREATED:20251205T132503Z
LAST-MODIFIED:20260116T085546Z
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SUMMARY:World Orphan Drug Congress USA 2026
DESCRIPTION:The World Orphan Drug Congress USA 2026 is presented by Terrapinn as a major global meeting point for the rare disease and orphan drug community\, bringing together more than 2 000 participants from over 50 countries in Boston on 9–11 June 2026. Over three days\, the congress combines plenary sessions\, focused thematic streams and pre‑conference workshops that cover patient data\, next generation therapies\, clinical development and regulation\, pricing and reimbursement\, AI and digital health\, diagnosis and drug discovery\, early access programmes and real‑world evidence. The programme features . \nAlongside the scientific and policy content\, the event places strong emphasis on networking and partnership building through panel discussions\, roundtables\, exhibition space\, one‑to‑one partnering meetings and a start‑up and innovation showcase. Patient advocates\, hospital and healthcare professionals\, European Reference Networks and investors are actively encouraged to take part\, with a limited number of complimentary VIP passes and opportunities for poster presentations on the expo floor. For ERDERA\, this congress offers a platform to strengthen international alignment\, clinical research collaboration and data‑driven innovation with global partners working on rare diseases and orphan drugs.
URL:https://erdera.org/event/world-orphan-drug-congress-usa-2026/
LOCATION:Boston Convention and Exhibition Center\, Boston\, MA\, Boston\, MA\, United States
CATEGORIES:Accelerator,Clinical Research,Data Hub,Expertise Services,International Alignment,Patient Involvement (PPIE)
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260616
DTEND;VALUE=DATE:20260618
DTSTAMP:20260422T221600
CREATED:20260309T105519Z
LAST-MODIFIED:20260408T122426Z
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SUMMARY:Advancement of Treatments for Rare Diseases
DESCRIPTION:The Cyprus Institute of Neurology & Genetics and the Deputy Ministry of Research\, Innovation and Digital Policy\, are organising the conference “Advancement of Treatments for Rare Diseases” on 16-17 June 2026\, at the Amphitheater\, The Cyprus Institute of Neurology & Genetics Nicosia\, Cyprus. \n\nRare Diseases affect approximately 30 million people across the European Union and present unique challenges due to their complexity\, rarity\, and limited treatment options. Advancing research\, improving access to innovative therapies\, and strengthening collaboration across Europe are essential to improving outcomes for patients and their families. \nThe Conference will feature the following key themes: \n\nStrengthening EU Collaboration for Rare Diseases\nAdvancing Research\, Innovation & Therapeutic Development\nImproving Regulatory Frameworks for Orphan Drugs\nEnsuring Accessibility\, Equity & Patient-Centred Care\nEnhancing Data Infrastructure\, Security & Digital Innovation\n\nThe target audience includes government ministries and public authorities; healthcare providers and clinical experts; researchers and the scientific community; representatives from the pharmaceutical and biotechnology industry; patient organisations and advocacy groups; data\, digital health\, and technology specialists; health economics\, ethics\, and legal experts; European funding bodies and research agencies; NGOs; and other high-level multi-stakeholder representatives. \nThe two-day event will highlight the EU’s ambition to make Europe a global leader in life sciences by 2030 and will focus on translating research and policy initiatives into tangible benefits for Rare Disease patients through better prevention\, diagnosis\, and treatment.
URL:https://erdera.org/event/advancement-of-treatments-for-rare-diseases/
LOCATION:Cyprus Institute of Neurology and Genetics\, Iroon Avenue 6\, Agios Dometios\, Nicosia\, 2371\, Cyprus
CATEGORIES:Clinical Research,Data Hub,ERDERA,Expertise Services,Funding,International Alignment,Patient Involvement (PPIE)
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