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.
DATA MANAGEMENT & QUALITY 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.
- 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
PATIENTS & RESEARCHERS TRAININGS
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.
- 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)
ERN TRAININGS & SUPPORT PROGRAM
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 exchanges and workshops. The primary audience are healthcare professionals from ERNs interested or active in research.
Academic clinicians and researchers involved in ERNs.
ONLINE ACADEMIC EDUCATION COURSE
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 format. The course foresees the development of 5 modules.
The implementation of the first modules are expected by the end of 2020.
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 advocates, health professionals who want to deepen their knowledge in rare diseases diagnostic research.
NEW NEEDS IN TRAINING
The overall objective is to ensure that training activities are tailored to emerging needs of the rare disease community across different EU countries. This will involve the development and adaptation of training activities according to progress of work (from 2021 onwards).
|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 soon||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||Info will be provided as soon as possible||Orphanet||Marie Verrey|
|12 - 14 October 2020||Istanbul, Turkey (ONLINE)||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 (ONLINE)||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 is OPEN||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
|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|