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X-ORIGINAL-URL:https://erdera.org
X-WR-CALDESC:Events for ERDERA
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DTSTART:20250101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260302T080000
DTEND;TZID=UTC:20260701T170000
DTSTAMP:20260501T194833
CREATED:20260109T103930Z
LAST-MODIFIED:20260109T111452Z
UID:10000029-1772438400-1782925200@erdera.org
SUMMARY:Data\, ethics and AI training for rare disease advocates
DESCRIPTION:The second edition of the Data\, Ethics and AI training is here! Developed under ERDERA – the European Rare Diseases Research Alliance\, this second edition responds to the growing need for patient advocates to understand data management\, ethical considerations and the role of AI in rare disease research\, and to engage meaningfully with researchers and decision-makers. \nThis hybrid programme will combine online training from March to July 2026 (6–8 hours spread over 5 months) and iIn-person sessions on 14–15 September 2026 in Barcelona. \nApplications close 2 February 2026. \nLearn more & apply here.
URL:https://erdera.org/event/data-ethics-and-ai-training-for-rare-disease-advocates/
CATEGORIES:Patient Involvement (PPIE),Training & Education
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/01/1767801707477-1-e1767955392719.jpg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260603
DTEND;VALUE=DATE:20260605
DTSTAMP:20260501T194833
CREATED:20251203T151356Z
LAST-MODIFIED:20260306T094811Z
UID:10000027-1780444800-1780617599@erdera.org
SUMMARY:European Conference on Rare Diseases and Orphan Products
DESCRIPTION:The next ECRD will take place on 3–4 June 2026 in Prague under the title “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases”. \nThe European Conference on Rare Diseases & Orphan Products (ECRD) is often described as one of the key patient-led policy events on rare diseases in Europe. \nThe conference brings together people living with rare diseases\, patient advocates\, policymakers\, healthcare professionals\, regulators\, representatives from industry\, and officials from EU Member States. This multidisciplinary format aims to support informed discussion and contribute to policy development relevant to the rare disease community. \nECRD 2026 is planned as a hybrid event\, with an anticipated 500 participants onsite in Prague and more than 300 online. The format is designed to facilitate the exchange of knowledge\, the sharing of experiences\, and collaboration across different sectors involved in rare diseases.
URL:https://erdera.org/event/european-conference-on-rare-diseases-and-orphan-products-june-2026-prague/
CATEGORIES:ERDERA,Patient Involvement (PPIE)
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260609
DTEND;VALUE=DATE:20260623
DTSTAMP:20260501T194833
CREATED:20251205T132503Z
LAST-MODIFIED:20260116T085546Z
UID:10000028-1780963200-1782172799@erdera.org
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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260616
DTEND;VALUE=DATE:20260618
DTSTAMP:20260501T194833
CREATED:20260309T105519Z
LAST-MODIFIED:20260408T122426Z
UID:10000030-1781568000-1781740799@erdera.org
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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