Training and Empowerment

The EJP RD Training and Empowerment program aims to develop knowledge and build capacity of the rare disease (RD) research and care community through the delivery of training programs on a wide range of relevant topics thereby providing opportunities to a large panel of stakeholders. 

Please, see below the list of scheduled trainings 

The main objectives of the training activities on data management & quality are to decrease rare disease data fragmentation and increase data quality by raising the level of capacities and help data sharing in a FAIR ecosystem
The training activities cover a variety of topics including but not limited to variant interpretation, data management, registries, FAIRfication processes, Orphacodes, biobanking, and undiagnosed cases. 

 Target audience:  

  • Academic researchers and clinicians 
  • Applicants of EJP RD joint transnational calls 
  • Biobank managers 
  • Clinical geneticists 
  • Database managers
  • European Reference Networks (ERNs) 
  • Healthcare professionals
  • Laboratory scientists & technicians 
  • Rare disease patient representatives including European Patient Advocacy Groups (ePAGs) representatives (i.e. RD patient representatives involved in ERNs) 
  • Registry curators

The overall objective of this training module is to improve rare disease research and innovation and to enhance the uptake of research results by building the capacity of the patient community and other key stakeholders. Moreover, dedicated educational activities will be aimed to train “expert” paediatric patients on rare diseases, paediatric medicines development and clinical research.  

Target audience: 

  • Rare disease patient representatives including but not restricted to European Patient Advocacy Groups (ePAGs) representatives (i.e. RD patient representative involved in ERNs) 
  • Young Persons Advisory Groups Representatives (YPAGs) 
  • Academic researchers 
  • Paediatric patients with rare chronic conditions (i.e. pre-adolescence and adolescence patients)  

The overall objective is to deliver research training programs for the European Reference Networks (ERNs) focusing on cross-cutting and overarching research themes. The training activities comprise fellow exchangeand workshops. The primary audience are healthcare professionals from ERNs interested or active in research. 

Target audience: 

Academic clinicians and researchers involved in ERNs.

The objective is to better inform and train the rare disease community as well as increase awareness and interest on rare disease research from students. To this end, an educational academic course on transversal and multidisciplinary aspects of rare diseases research will be made available for all stakeholders in a fully online formatThe course foresees the development of 5 modules
The implementation of the first modules are expected by the end of 2020.  

 Target audience: 

This online course is open to anyone, although it is designed for individuals with a prior interest in rare diseases, diagnostic research, biology, especially postgraduate students and medical students. Also, it is meant to be used by patient advocacy representatives and advocateshealth professionals who want to deepen their knowledge in rare diseases diagnostic research.

The overall objective is to ensure that training activities are tailored to emerging needs of the rare disease community across different EU countriesThis will involve the development and adaptation of training activities according to progress of work (from 2021 onwards) 

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 soonEURORDISVirginie 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 activitiesInfo will be provided as soon as possibleOrphanet Marie Verrey
12 - 14 October 2020Istanbul, Turkey (ONLINE)Quality 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 closedACURARE and KU LeuvenLiliane Geyskens
29 - 30 October 2020 Madrid, Spain (ONLINE)Toward Innovative Research Biobanks for Rare Diseases: Overcoming the ChallengesReseachers, clinicians, biobankers, and rare disease patients representatives Registration is OPENInstituto de Salud Carlos III (ISCIII)Eva Bermejo
28 September – 2 October 2020Rome, Italy (ONLINE)International 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 closedIstituto 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