Training and Empowerment

Date	Location	Training course	Target audience	Registration open/closed	Organiser	Contact person
19 - 20 November 2020	Gdansk, Poland	Training for patient representatives and advocates on leadership and communication skills	Rare disease patient advocates, including European Patient Advocacy Groups (ePAGs) advocates and beyond	Registration will open in April 2020	EURORDIS	Virginie 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 activities	Registration will open in May 2020 and close in July 2020	Orphanet	Marie Verrey
12 - 14 October 2020	Istanbul, Turkey	Quality assurance, variant interpretation and data management in the NGS diagnostics era	Laboratory 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 medicine	Registration is OPEN	ACURARE and KU Leuven	Liliane Geyskens
29 - 30 October 2020	Madrid, Spain	Training on biobanking and working with human biological samples	Reseachers, clinicians, biobankers	Info will be provided as soon as possible	Instituto de Salud Carlos III (ISCIII)	Mary Wang
28 September – 2 October 2020	Rome, Italy	International Summer School on Rare Disease Registries and FAIRification of Data	Researchers, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives.	Registration will open May 2020	Istituto Superiore di Sanità, National Centre for Rare Diseases	Claudio Carta
8 - 12 June 2020	Barcelona, Spain	ExPRESS Expert Patients and Researchers: EURORDIS Summer School on Medicines Research & Development	Rare disease patient advocates and researchers	Registration closed	EURORDIS	Virginie Bros-Facer, Raquel Castro
11 – 14 May 2020	Graz, Austria (ONLINE)	Biomedical Research Training Workshop Week. Implementing Biomedical Research Projects: The Complete Workflow from Concept, ELSI and Privacy Considerations to High-Quality Biobanking	Researchers, clinicians, and biobankers. Participants from EU-13 countries and patient representatives.	Registration closed	EJP RD and EASI-Genomics	Viridiana, Beltrán Venegas Mary Wang
27 – 29 April 2020	Rome, Italy (ONLINE)	International Course: Training on strategies to foster solutions of undiagnosed rare disease cases	International research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research of Rare Diseases	Registration closed	Istituto Superiore di Sanità (ISS)	Claudio Carta
9 - 13 March 2020	Paris, France (ONLINE)	Training for patient advocates on scientific innovation and translational research aspects in rare diseases: EURORDIS Winter School on Scientific Innovation and Translational Research	Rare disease patient advocates	Registration closed	EURORDIS	Virginie Bros-Facer, Raquel Castro
26 - 29 November 2019	Maastricht, The Netherland	Workshop and Hackathon: Molecular pathways for rare disease (FAIR) data analysis	Scientists, researchers, clinicians, and bio-informaticians	Registration closed	UM	Chris Evelo
25 - 26 November 2019	Barcelona, Spain	Training for patient representatives and advocates Leadership School on Healthcare & Research	European Patient Advocacy Group Representatives involved in European Reference Networks	Registration closed	EURORDIS	Virginie Bros-Facer
29 - 30 October 2019	Vilnius, Lithuania	Organizing & maximizing rare disease biological sample data in biobanks	Researchers and clinicians	Registrations closed	FTELE	Mary Wang
23 - 25 October 2019	Leuven, Belgium	Quality assurance, variant interpretation and data management in the NGS diagnostics era	Scientists, bio-informaticians and clinicians	Registrations closed	KU Leuven	Gert Matthijs
23 - 27 September 2019	Rome, Italy	International Summer School on Rare Disease Registries and FAIRification of Data	international researcher community, patients, registry curators, database managers, healthcare professionals and students	Registrations closed	ISS	Claudio Carta
10 - 14 June 2019	Barcelona, Spain	ExPRESS Expert Patients and Researchers Summer School	RD patient representatives and researchers	Registrations closed	EURORDIS	Virginie Bros-Facer
1 - 2 April 2019	Milan, Italy	Training Workshop organising & maximising RD biological samples data in biobanks	Researchers and clinicians	Registrations closed	FTELE	Mary Wang