Training and Empowerment

DateLocationTraining courseTarget audienceRegistration open/closedOrganiserContact person
19 - 20 November 2020Gdansk, PolandTraining for patient representatives and advocates on leadership and communication skillsRare disease patient advocates, including European Patient Advocacy Groups (ePAGs) advocates and beyondRegistration will open in April 2020EURORDISVirginie Bros-Facer, Raquel Castro
Last trimester 2020 Austria, Norway, Spain, Italy Orphanet rare disease nomenclature and Orphanet rare disease ontology (ORDO / HOOM)Researchers, clinicians and members of IT teams involved in rare disease research activitiesRegistration will open in May 2020 and close in July 2020Orphanet Marie Verrey
12 - 14 October 2020Istanbul, TurkeyQuality assurance, variant interpretation and data management in the NGS diagnostics eraLaboratory scientists (EBMG registered), junior scientists, clinical geneticists, other medical specialists in training, policy makers and assessors for laboratory accreditation, and patient representatives, with a basic knowledge in biology or medicineRegistration is OPENACURARE and KU LeuvenLiliane Geyskens
29 - 30 October 2020 Madrid, SpainTraining on biobanking and working with human biological samplesReseachers, clinicians, biobankersInfo will be provided as soon as possibleInstituto de Salud Carlos III (ISCIII)Mary Wang
28 September – 2 October 2020Rome, ItalyInternational Summer School on Rare Disease Registries and FAIRification of DataResearchers, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives.Registration will open May 2020Istituto Superiore di Sanità, National Centre for Rare DiseasesClaudio Carta
8 - 12 June 2020Barcelona, SpainExPRESS Expert Patients and Researchers: EURORDIS Summer School on Medicines Research & DevelopmentRare disease patient advocates and researchersRegistration closedEURORDISVirginie Bros-Facer, Raquel Castro
11 – 14 May 2020Graz, Austria (ONLINE)Biomedical Research Training Workshop Week. Implementing Biomedical Research Projects: The Complete Workflow from Concept, ELSI and Privacy Considerations to High-Quality BiobankingResearchers, clinicians, and biobankers. Participants from EU-13 countries and patient representatives.Registration closedEJP RD and EASI-GenomicsViridiana, Beltrán Venegas
Mary Wang
27 – 29 April 2020Rome, Italy (ONLINE)International Course: Training on strategies to foster solutions of undiagnosed rare disease casesInternational research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research of Rare DiseasesRegistration closedIstituto Superiore di Sanità (ISS)Claudio Carta
9 - 13 March 2020Paris, France (ONLINE)Training for patient advocates on scientific innovation and translational research aspects in rare diseases: EURORDIS Winter School on Scientific Innovation and Translational ResearchRare disease patient advocatesRegistration closed EURORDISVirginie Bros-Facer, Raquel Castro
26 - 29 November 2019Maastricht, The NetherlandWorkshop and Hackathon: Molecular pathways for rare disease (FAIR) data analysis Scientists, researchers,
clinicians, and bio-informaticians
Registration closedUM Chris Evelo
25 - 26 November 2019Barcelona, SpainTraining for patient representatives and advocates Leadership School on Healthcare & ResearchEuropean Patient Advocacy Group Representatives involved in European Reference NetworksRegistration closedEURORDISVirginie Bros-Facer
29 - 30 October 2019Vilnius, LithuaniaOrganizing & maximizing rare disease biological sample data in biobanksResearchers and clinicians Registrations closedFTELEMary Wang
23 - 25 October 2019Leuven, BelgiumQuality assurance, variant interpretation and data management in the NGS diagnostics era
Scientists, bio-informaticians and clinicians Registrations closedKU LeuvenGert Matthijs
23 - 27 September 2019Rome, ItalyInternational Summer School on Rare Disease Registries and FAIRification of Data
international researcher community, patients, registry curators, database managers, healthcare professionals and students Registrations closedISSClaudio Carta
10 - 14 June 2019Barcelona, SpainExPRESS Expert Patients and Researchers Summer School
RD patient representatives and researchersRegistrations closedEURORDISVirginie Bros-Facer
1 - 2 April 2019Milan, ItalyTraining Workshop organising & maximising RD biological samples data in biobanks
Researchers and clinicians Registrations closedFTELEMary Wang