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.
|Date||Location||Training/Workshop||Target audience||Registration open/closed||Organiser||Contact person|
|21 - 23 June 2023||Barcelona, Spain||Paediatric Expert Patients Training Workshop||Teenagers aged from 12 to 18 years old with an interest in health, biomedical research, healthcare, and children rights||Application deadline: May 31|
|30 June 2023||Online||Replicated N-of-1 RCTs for Rare Diseases||The workshop is open to the international research community, clinicians, medical specialists, healthcare professionals and advocacy patient groups with knowledge on the RD Clinical Trials.Open to a maximum of 60 patient representatives||Application deadline: June 29 11:45pm||Daniel Dobben, Maya Dirani|
|25 - 29 September 2023||Rome, Italy||International Summer School on Rare Disease Registries and FAIRification of data||International research community, to clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patient representatives.||Application deadline: July 5||Claudio Carta||Claudio Carta|
|12 - 13 October 2023||Radboud University Medical Center Nijmegen, Netherlands||ERN Workshop: CDH1 related hereditary diffuse type gastric cancer: the shift from prophylactic total gastrectomy to optimal endoscopic surveillance||The workshop is opened for the entire ERN community, PhD students, researchers, and clinicians interested in the field of hereditary diffuse type gastric cancer.||Application deadline: from May 31 2023 until July 15 2023||Tanya Bisseling||Tanya Bisseling|
|13 - 14 October 2023||Rome, Italy||ERN Workshop: Advances in regenerative medicine and tissue engineering for rare musculo-skeletal diseases||The workshop is suitable for the entire ERN community, with a target audience of multiple levels (PhD students, postDoc, researchers, clinicians, resident fellows, specialized paramedics).||Application deadline: July 1||Prof Wanda Lattanzi, Dr Lorena Di Pietro||Prof Wanda Lattanzi, Dr Lorena Di Pietro|
|18 - 20 October 2023||Warsaw, Poland||Quality assurance, variant interpretation and data management in the NGS diagnostics era||The training course is open to the international research community, clinicians, medical specialist, laboratory scientists (EBMG registered), junior laboratory scientists, clinical geneticists, policy makers and assessors for laboratory accreditation, and patient representatives, with a basic knowledge in biology or medicine.||Application deadline: June 20||Krystyna H. Chrzanowska||Krystyna H. Chrzanowska|
|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|
|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|
|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|
|29 - 30 October 2019||Vilnius, Lithuania||Organizing & maximizing rare disease biological sample data in biobanks||Researchers and clinicians||Registrations closed||FTELE||Mary Wang|
|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|
|March 8-9, 2021||Oslo, Norway||National training on Orphanet nomenclature||Orphanet Norway||Registration closed||Oslo University Hospital||Lene Martinsen|
|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|
|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|
|10 - 14 June 2019||Barcelona, Spain||ExPRESS Expert Patients and Researchers Summer School||RD patient representatives and researchers||Registrations closed||EURORDIS||Virginie Bros-Facer|
|First Semester 2021||Barcelona, Spain||ExPRESS Expert Patients and Researchers EURORDIS Summer School||RD patient representatives and researchers||Registration closed||EURORDIS||Virginie Bros-Facer|
|21-25 March 2022||Online||EURORDIS Winter School||Registration closed|
|6-10 June 2022||Barcelona, Spain||EURORDIS Summer School||RD patient representatives and researchers||Registration closed|
|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|
|29 - 30 October 2020||Madrid, Spain (ONLINE)||Toward Innovative Research Biobanks for Rare Diseases: Overcoming the Challenges||Reseachers, clinicians, biobankers, and rare disease patients representatives||Registration closed||Instituto de Salud Carlos III (ISCIII)||Eva Bermejo|
|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 closed||ACURARE and KU Leuven||Liliane Geyskens|
|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 closed||Istituto Superiore di Sanità, National Centre for Rare Diseases||Claudio Carta|
|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
|November 2021||Online||The Paediatric expert patients training||Between 12 and 18 years old interested in improving health research||Registration closed||TEDDY European Network of Excellence for Paediatric Research and Sant Joan de Déu Research Foundation||Mariangela Lupo|
|31 March - 1 April 2022||Rennes, France||Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment||Geneticists, fetal medicine experts, neurosurgeons, rehabilitation medicine specialists, pediatric and adult urologists, pediatricians – employees of or affiliated to an ERN-Full Member or affiliated Partner institution.||Registration closed||Andrea Manunta, Giovanni Mosiello|
|25 – 27 October 2021||Online||Pluripotent stem cells for rare disease research: banking, data, application||Rare Diseases Clinicians and Researchers||Registration closed||IBMT, FTELE||Nancy Mah|
|12-14 April 2021||Rome, Italy||Training on Strategies to foster solutions of undiagnosed rare disease cases||international research community, ERNs, UDNI, Solve-RD, clinicians and 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|
|3-5 April 2023||Rome, Italy||Training on strategies to foster solutions of undiagnosed rare disease cases||The course is open to the international research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research on rare diseases.||Registration closed||Dr. Claudio Carta||Dr. Claudio Carta,
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|11-13 April 2022||Online||Training on strategies to foster solutions of undiagnosed rare disease cases||The International course is open to the international research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research on Rare Diseases.||Registration closed||Dr. Claudio Carta|
|September 27 - October 1, 2021||Online||International Summer School on Rare Disease Registries and FAIRification of Data||international research community, ERNs, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives||Registration closed||IIstituto Superiore di Sanità (ISS)||Claudio Carta|
|10-11 November 2022||Online||Training for patient representatives and advocates on leadership and communication skills||The International course is open to patient representatives involved in the 24 ERNs, including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates.||Registration closed||Claudio Carta|
|26th – 27th October 2023||Gdańsk, Poland||Training for patient representatives and advocates on leadership and communication skills||Open to a maximum of 60 patient representatives||Registration closed||Karolina Sledzinska||Karolina Sledzinska|
|10-11 May 2021||Ankara, Turkey (Online)||Rare Disease Biobanks: Roles in Research Networks and International Collaborations||Rare Diseases Clinicians and Researcers||Registration closed||HUGEN||HUGEN Ece Akhan Guzelcan|
|27-29 October 2021||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 closed||Istituto Superiore di Sanità (ISS)||Claudio Carta|
|27 - 28 April 2023||Riga, Latvia||EJP RD – ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)||Clinical geneticists, laboratory geneticists, breast surgeons, gynecologists, oncopsychologists, public health specialists, medical oncologists, radiologists, radiotherapists, pathologists – employees or affiliated to an ERN-Full Member or affiliated Partner institution.||Registration closed||LĪga Hartpenga||LĪga Hartpenga|
|10 September||Online||Online Training Orphanet nomenclature and Orphanet Rare Disease Ontology – ORDO||International research community, clinicians, medical specialists, RD biobank/registry managers, healthcare IT professionals and RD patient representatives||Registration closed||Orphanet|
|4-5 July 2022||Bari, Italy||Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases||PhD students, post-doc researchers, senior scientists, young clinicians, investigators and academics affiliated to the ERNs||Registration closed||Donato Bonifazi|
|26-30 September 2022||Online or face-to-face format will be defined and communicated to the selected participants by the 3rd of May 2022.||International Summer School on Rare Disease Registries and FAIRification of data||The training course is open to the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.||Registration closed||Claudio Carta|
|18 - 19 May 2023||Lisbon, Portugal||EJP RD – ERN Workshop: Genetics and Precision Medicine in Rare Diseases||Medical doctors, geneticists, molecular researchers – employees of affiliated to an ERN-Full Member or affiliated Partner institution.||Registration closed||Carolina Neves||Carolina Neves|
|12 - 14 June 2023||Madrid, Spain||ERN biological samples in Rare Diseases research: Added value and usefulness||Healthcare professionals, researchers, clinicians, biobank managers, database managers and rare disease patient advocates.||Registration closed||Rodrigo Sarmiento Suarez||Rodrigo Sarmiento Suarez|
|4 May 2022||Gliwice, Poland||Endocrine cancer: a challenge in adults and children||Endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists – employees of affiliated to an ERN-Full Member or affiliated Partner institution.||Registration closed||Barbara Jarzab|
|14 December 2021||Online||Does Randomization matter in RD clinical trials?||The workshop is open to the international research community, clinicians, medical specialists, healthcare professionals and advocacy patient groups with knowledge on the RD Clinical Trials.||Registration closed|
|25 - 26 May 2023||Hamburg, Germany||EJP RD – ERN Workshop: Young Investigator Workshop on Basic Science and Translational Immunology in PSC||30 young scientists (younger than 40 years old) and ten senior scientists involved in PSC research for mentoring and state of the art presentations.||Registration closed||International PSC Study Group (IP-SCSG)|
|9-10 June 2022||Lyon, France||Translational research on bone impairment in rare diseases||Senior scientists, senior physicians, post docs, medical fellows, PhD students||Registration closed||Justine Bacchetta|
|8 - 9 June 2023||Padua, Italy||EJP RD – ERN Workshop: The Blood-Brain Barrier: current research and novel therapeutic crossing approaches||PhD students, researchers, and clinicians of all levels who are involved in brain and neurological diseases and/or in vascular biology.||Registration closed||Dr. Laura Paneghetti||Dr. Laura Paneghetti|
|8 - 9 May 2023||Nijmegen, Netherlands||EJP RD – ERN Workshop: RARE TOGETHER||All research levels are welcome.||Registration closed||Rosanne Smits||Rosanne Smits
|4 - 6 June 2023||Krakow, Poland||EJP RD – ERN Workshop on Fetal and Postnatal multidisciplinary management in RD (Myelomeningocele and Lower urinary tract obstruction, LUTO)||The workshop is primarily addressed to the healthcare providers working together with ITHACA, eUROGEN and ERKNet: Foetal surgeon, neonatologist, nephrologist, neurosurgeon, obstetrician, radiologist, paediatric urologist who are involved in the management of MMC and LUTO might be interested to participate in this event. The workshop might be of a great value for all ERN researchers||Registration closed||Giovanni Mosiello, Rafal Chrzan, Michelle Battye, Anne Hugon||Jen Tidman|
|27-28 March 2023||Valencia, Spain||EJP RD – ERN Workshop: New Therapeutical Approaches for Inherited Retinal Dystrophies||Beginners and medium level researchers – junior physicians and scientists.||Registration closed||Dr Regina Rodrigo||Dr Regina Rodrigo
|14-15 June 2022||Lyon, France||Functional exploration of genetic variants in cardiac diseases||Cardiologist, molecular biologist, post docs, medical fellows, PhD students||Registration closed||Philippe Chevalier|
|23-24 March 2023||Freiburg, Germany||EJP RD – ERN Workshop: Epidermolysis bullosa: from genes to translation into therapies||Beginners and medium level researchers – junior physicians and scientists.||Registration closed||Prof. Dr. Cristina Has||Prof. Dr. Cristina Has
|22-23 May 2023||Milan, Italy||EJP RD ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach||This workshop is addressed to physicians, researchers from ERN Full Members or Affiliated Partners from the junior to senior level||Registration closed||Dr Marco Vitellaro|
|4-5 March 2022||Nice, France||Contemporary outcome measures in neuromuscular diseases||The workshop is open for different target groups, especially those who want to deepen their knowledge in clinical outcomes measures and innovative digital outcomes as researchers and clinicians affiliated to an ERN-Full Member or Affiliated Partner Institution, physiotherapists and students.||Registration closed||Sabrina Sacconi|
|29-30 September 2022||Turku, Finland||Comprehensive gene profiling, molecular tumor board (mtb) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers||The Workshop is open for physicians and cancer researchers from ERN-Full Member or Affiliated Partner Institutions, and especially those who want to deepen their knowledge in working within MTB and innovative genomic profiling.||Registration closed||Pia Vihinen|
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.
Target audience: 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.
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 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).