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. 

DateLocationTraining/WorkshopTarget audienceRegistration open/closedOrganiserContact person
3-7 June 2024Barcelona, SpainInternational Course EURORDIS Open Academy Training on Medicines Research & DevelopmentTo take part, you must be a rare disease patient advocate or researcher. As all training is conducted in English, a good level of the language is required. Patient advocates participating must represent an organisation which is a member of EURORDIS. If this is not your case, you are still invited to apply but your organisation will be asked to apply to become a member of EURORDIS should you be selected.Registration closedEURORDISRachel Butcher (rachel.butcher@eurordis.org)
3-7 June 2024Barcelona, SpainInternational Course EURORDIS Open Academy School on Scientific Innovation & Translational ResearchTo take part, you must be a rare disease patient advocate. As all training is conducted in English, a good level of the language is required. Patient advocates participating must represent an organisation which is a member of EURORDIS. If this is not your case, you are still invited to apply but your organisation will be asked to apply to become a member of EURORDIS should you be selected.Registration closedEURORDISRachel Butcher (rachel.butcher@eurordis.org)
17 May 2024OnlineKey Solutions to Model Longitudinal Natural History Data
Application in Ataxia Disease		The training course is suitable for healthcare professionals, basic researchers, patient/patient representatives, CRO representatives, industry professionals, and methodologists/statisticians.N/AUniversitaetsklinikum Aachen (Germany) and Assistance Publique Hopitaux de Paris (France)
26 April 2024OnlineInterim Analysis, Adaptations and Master ProtocolsThe training course is suitable for healthcare professionals, basic researchers, patient/patient representatives, CRO representatives, industry professionals, and methodologists/statisticians.N/AUniversitaetsklinikum Aachen (Germany) and Assistance Publique Hopitaux de Paris (France)
5 April 2024OnlineEarly Phase Trial designs in Rare diseasesThe training course is suitable for healthcare professionals, basic researchers, patient/patient representatives, CRO representatives, industry professionals, and methodologists/statisticians.N/AUniversitaetsklinikum Aachen (Germany) and Assistance Publique Hopitaux de Paris (France)
22 March 2024OnlineBayesian Thinking and MethodsThe training course is suitable for healthcare professionals, basic researchers, patient/patient representatives, CRO representatives, industry professionals, and methodologists/statisticians.N/AUniversitaetsklinikum Aachen (Germany) and Assistance Publique Hopitaux de Paris (France)
13-15 March 2024Rome, ItalyStrategies to foster solutions of undiagnosed rare disease caseThe 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 closedISSClaudio Carta (claudio.carta@iss.it), Laura Lee Cellai (laura.cellai@iss.it)
8 March 2024OnlineStatistical Methodology for Very Small (and Very Large) Studies (VIDEO)The training course is suitable for healthcare professionals, basic researchers, patient/patient representatives, CRO representatives, industry professionals, and methodologists/statisticians.N/AUniversitaetsklinikum Aachen (Germany) and Assistance Publique Hopitaux de Paris (France)
26 January 2024OnlineAdvanced webinar: Real-World data, Machine learning and Deep analytics in rare diseases: Regulatory grade data collection for marketing authorization submissions – what is buzz, what is realistic?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 open until 25 January 2024Universitaetsklinikum Aachen (Germany) and Assistance Publique Hopitaux de Paris (France)Daniel Bodden (dbodden@ukaachen.de), Maya Dirani (maya.dirani@ejprd-project.eu)
13-14 December 2023Milan, ItalyManaging RD biological sample data in Biobanks: lessons learned from the EJP RD training workshopsThe training workshop is open to healthcare professionals, researchers, clinicians, biobank managers, database managers and rare disease patient advocates. In particular, we welcome participants from all types of biobanks (academic, hospital, private) with focuses on rare diseases.Registration closedFondazione Telethon (FTELE)Lorena Casareto (lorena.casareto@ejprd-project.eu) and Irene Artuso (irene.artuso@ejprd-project.eu).
Please, indicate in the Subject: EJP RD Biobanking Training 2023
26-27 October 2023Gdańsk, PolandTraining for patient representatives and advocates on leadership and communication skillsOpen to a maximum of 60 patient representativesRegistration closedKarolina SledzinskaKarolina Sledzinska
18-20 October 2023Warsaw, PolandQuality assurance, variant interpretation and data management in the NGS diagnostics eraThe 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. Registration closedKrystyna H. ChrzanowskaKrystyna H. Chrzanowska
13-14 October 2023Rome, ItalyERN Workshop: Advances in regenerative medicine and tissue engineering for rare musculo-skeletal diseasesThe workshop is suitable for the entire ERN community, with a target audience of multiple levels (PhD students, postDoc, researchers, clinicians, resident fellows, specialized paramedics). Registration closedProf Wanda Lattanzi, Dr Lorena Di PietroProf Wanda Lattanzi, Dr Lorena Di Pietro
12-13 October 2023Radboud University Medical Center Nijmegen, NetherlandsERN Workshop: CDH1 related hereditary diffuse type gastric cancer: the shift from prophylactic total gastrectomy to optimal endoscopic surveillanceThe workshop is opened for the entire ERN community, PhD students, researchers, and clinicians interested in the field of hereditary diffuse type gastric cancer. Application closedTanya BisselingTanya Bisseling
29 September 2023OnlineEJP RD Online Training: Item response models for analysing assessments in rare diseasesThe 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 closedUniversitaetsklinikum Aachen (Germany) and Assistance Publique Hopitaux de Paris (France)dbodden@ukaachen.de and maya.dirani@ejprd-project.eu.
Please, indicate in the Subject: WP20 June training webinar 
25-29 September 2023Rome, ItalyInternational Summer School on Rare Disease Registries and FAIRification of dataInternational research community, to clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patient representatives.Registration closedClaudio CartaClaudio Carta
20-22 September 2023Istanbul, TürkiyeVariant Prioritization and Enrichment for Rare Diseases WorkshopERNs, EJP RDRegistration closed
4-5 September 2023Regenerative Medicine Center Utrecht, The NetherlandsEJP RD ERN Workshop - Urogenital Tissue Engineering from bedside to bench and backThe workshop is open to ERN eUROGEN members, including patient representatives, clinicians and basic scientists.Registration closedPetra de GraafPetra de Graaf
30 June 2023OnlineReplicated N-of-1 RCTs for Rare DiseasesThe 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 representativesRegistration closedDaniel Dobben, Maya Dirani
29 June 2023Barcelona, SpainChallenges and barriers for gene therapies in rare neurological disorders: preparing the next generation of clinicians and researchersThe course is open for clinicians, clinical researchers and translational researchers who are or want to be involved in the implementation and development of genetic therapies in the 2025-2035 period.Registration closedDavid Gómez-AndrésDavid Gómez-Andrés
28 June 2023OnlineEJP RD - RD-Connect Genome-Phenome Analysis Platform
(GPAP) Webinar		The webinar is open to clinical geneticists and researchers working in the rare disease field who are interested in using the RD-Connect GPAP platform to analyse their rare disease cases. No previous experience in conducting analyses in the RD-Connect GPAP is required.Registration closedCentre Nacional d’Anàlisi Genòmica (CNAG-CRG, Barcelona, Spain)Luca Zalatnai
21 - 23 June 2023Barcelona, SpainPaediatric Expert Patients Training WorkshopTeenagers aged from 12 to 18 years old with an interest in health, biomedical research, healthcare, and children rightsRegistration closed
12 - 14 June 2023Madrid, SpainERN biological samples in Rare Diseases research: Added value and usefulnessHealthcare professionals, researchers, clinicians, biobank managers, database managers and rare disease patient advocates.Registration closedRodrigo Sarmiento SuarezRodrigo Sarmiento Suarez
8 - 9 June 2023Padua, ItalyEJP RD – ERN Workshop: The Blood-Brain Barrier: current research and novel therapeutic crossing approachesPhD students, researchers, and clinicians of all levels who are involved in brain and neurological diseases and/or in vascular biology.Registration closedDr. Laura PaneghettiDr. Laura Paneghetti
4 - 6 June 2023Krakow, PolandEJP 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 researchersRegistration closedGiovanni Mosiello, Rafal Chrzan, Michelle Battye, Anne HugonJen Tidman
25 - 26 May 2023Hamburg, GermanyEJP RD – ERN Workshop: Young Investigator Workshop on Basic Science and Translational Immunology in PSC30 young scientists (younger than 40 years old) and ten senior scientists involved in PSC research for mentoring and state of the art presentations.Registration closedInternational PSC Study Group (IP-SCSG)
22-23 May 2023Milan, ItalyEJP RD ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approachThis workshop is addressed to physicians, researchers from ERN Full Members or Affiliated Partners from the junior to senior levelRegistration closedDr Marco Vitellaro
18 - 19 May 2023Lisbon, PortugalEJP RD – ERN Workshop: Genetics and Precision Medicine in Rare DiseasesMedical doctors, geneticists, molecular researchers – employees of affiliated to an ERN-Full Member or affiliated Partner institution.Registration closedCarolina NevesCarolina Neves
8 - 9 May 2023Nijmegen, NetherlandsEJP RD – ERN Workshop: RARE TOGETHERAll research levels are welcome.Registration closedRosanne Smits
Rosanne Smits
Rosanne.Smits@radboudumc.nl
27 - 28 April 2023Riga, LatviaEJP 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 closedLĪga HartpengaLĪga Hartpenga
3-5 April 2023Rome, Italy Training on strategies to foster solutions of undiagnosed rare disease casesThe 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 closedDr. Claudio CartaDr. Claudio Carta,
claudio.carta@iss.it (in Cc laura.cellai@iss.it)
27-28 March 2023Valencia, SpainEJP RD – ERN Workshop: New Therapeutical Approaches for Inherited Retinal DystrophiesBeginners and medium level researchers – junior physicians and scientists.Registration closedDr Regina Rodrigo
Dr Regina Rodrigo
rrodrigo@cipf.es
23-24 March 2023Freiburg, GermanyEJP RD – ERN Workshop: Epidermolysis bullosa: from genes to translation into therapiesBeginners and medium level researchers – junior physicians and scientists.Registration closedProf. Dr. Cristina HasProf. Dr. Cristina Has
cristina.has@uniklinik-freiburg.de
10-11 November 2022Online Training for patient representatives and advocates on leadership and communication skillsThe 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 closedClaudio Carta
29-30 September 2022Turku, Finland Comprehensive gene profiling, molecular tumor board (mtb) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancersThe 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 closedPia Vihinen
26-30 September 2022Online 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 dataThe training course is open to the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.Registration closedClaudio Carta
4-5 July 2022Bari, ItalyModelling & Simulation: Research Methodologies for Small Populations in Rare DiseasesPhD students, post-doc researchers, senior scientists, young clinicians, investigators and academics affiliated to the ERNsRegistration closedDonato Bonifazi
14-15 June 2022Lyon, FranceFunctional exploration of genetic variants in cardiac diseasesCardiologist, molecular biologist, post docs, medical fellows, PhD studentsRegistration closedPhilippe Chevalier
9-10 June 2022Lyon, France Translational research on bone impairment in rare diseasesSenior scientists, senior physicians, post docs, medical fellows, PhD studentsRegistration closedJustine Bacchetta
6-10 June 2022Barcelona, Spain EURORDIS Summer SchoolRD patient representatives and researchersRegistration closed
4 May 2022Gliwice, Poland Endocrine cancer: a challenge in adults and childrenEndocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists – employees of affiliated to an ERN-Full Member or affiliated Partner institution.Registration closedBarbara Jarzab
11-13 April 2022Online 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 closedDr. Claudio Carta
31 March - 1 April 2022Rennes, France Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatmentGeneticists, 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 closedAndrea Manunta, Giovanni Mosiello
21-25 March 2022OnlineEURORDIS Winter SchoolRegistration closed
4-5 March 2022Nice, France Contemporary outcome measures in neuromuscular diseasesThe 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 closedSabrina Sacconi
14 December 2021OnlineDoes 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
November 2021OnlineThe Paediatric expert patients trainingBetween 12 and 18 years old interested in improving health researchRegistration closedTEDDY European Network of Excellence for Paediatric Research and Sant Joan de Déu Research FoundationMariangela Lupo
27-29 October 2021OnlineQuality 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 closedIstituto Superiore di Sanità (ISS)Claudio Carta
25 – 27 October 2021OnlinePluripotent stem cells for rare disease research: banking, data, applicationRare Diseases Clinicians and ResearchersRegistration closedIBMT, FTELENancy Mah
September 27 - October 1, 2021OnlineInternational Summer School on Rare Disease Registries and FAIRification of Datainternational research community, ERNs, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives Registration closedIIstituto Superiore di Sanità (ISS)Claudio Carta
10 September 2021OnlineOnline Training Orphanet nomenclature and Orphanet Rare Disease Ontology – ORDOInternational research community, clinicians, medical specialists, RD biobank/registry managers, healthcare IT professionals and RD patient representativesRegistration closedOrphanet
10-11 May 2021Ankara, Turkey (Online)Rare Disease Biobanks: Roles in Research Networks and International CollaborationsRare Diseases Clinicians and ResearcersRegistration closedHUGENHUGEN Ece Akhan Guzelcan
12-14 April 2021Rome, ItalyTraining on Strategies to foster solutions of undiagnosed rare disease casesinternational 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 closedIstituto Superiore di Sanità (ISS)Claudio Carta
March 8-9, 2021Oslo, NorwayNational training on Orphanet nomenclatureOrphanet NorwayRegistration closedOslo University HospitalLene Martinsen
First Semester 2021Barcelona, SpainExPRESS Expert Patients and Researchers EURORDIS Summer SchoolRD patient representatives and researchersRegistration closedEURORDISVirginie Bros-Facer
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 closedInstituto de Salud Carlos III (ISCIII)Eva Bermejo
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
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

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. 

 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

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.  

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)  

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).