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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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