General Information on Training

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
3-7 June 2024	Barcelona, Spain	International Course EURORDIS Open Academy Training on Medicines Research & Development	To 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 closed	EURORDIS	Rachel Butcher (rachel.butcher@eurordis.org)
3-7 June 2024	Barcelona, Spain	International Course EURORDIS Open Academy School on Scientific Innovation & Translational Research	To 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 closed	EURORDIS	Rachel Butcher (rachel.butcher@eurordis.org)
15-22 March 204	Online	Modelling natural history in longitudinal data-Challenges and Solutions	More information coming soon	More information coming soon	More information coming soon	More information coming soon
13-15 March 2024	Rome, Italy	Strategies to foster solutions of undiagnosed rare disease case	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	ISS	Claudio Carta (claudio.carta@iss.it), Laura Lee Cellai (laura.cellai@iss.it)
26 January 2024	Online	Advanced 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 2024	Universitaetsklinikum Aachen (Germany) and Assistance Publique Hopitaux de Paris (France)	Daniel Bodden (dbodden@ukaachen.de), Maya Dirani (maya.dirani@ejprd-project.eu)
13-14 December 2023	Milan, Italy	Managing RD biological sample data in Biobanks: lessons learned from the EJP RD training workshops	The 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 closed	Fondazione 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 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
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.	Registration closed	Krystyna H. Chrzanowska	Krystyna H. Chrzanowska
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).	Registration closed	Prof Wanda Lattanzi, Dr Lorena Di Pietro	Prof Wanda Lattanzi, Dr Lorena Di Pietro
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 closed	Tanya Bisseling	Tanya Bisseling
29 September 2023	Online	EJP RD Online Training: Item response models for analysing assessments in 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.	Registration closed	Universitaetsklinikum 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 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.	Registration closed	Claudio Carta	Claudio Carta
20-22 September 2023	Istanbul, Türkiye	Variant Prioritization and Enrichment for Rare Diseases Workshop	ERNs, EJP RD	Registration closed
4-5 September 2023	Regenerative Medicine Center Utrecht, The Netherlands	EJP RD ERN Workshop - Urogenital Tissue Engineering from bedside to bench and back	The workshop is open to ERN eUROGEN members, including patient representatives, clinicians and basic scientists.	Registration closed	Petra de Graaf	Petra de Graaf
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	Registration closed		Daniel Dobben, Maya Dirani
29 June 2023	Barcelona, Spain	Challenges and barriers for gene therapies in rare neurological disorders: preparing the next generation of clinicians and researchers	The 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 closed	David Gómez-Andrés	David Gómez-Andrés
28 June 2023	Online	EJP 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 closed	Centre Nacional d’Anàlisi Genòmica (CNAG-CRG, Barcelona, Spain)	Luca Zalatnai
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	Registration closed
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
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
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
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)
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
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
8 - 9 May 2023	Nijmegen, Netherlands	EJP RD – ERN Workshop: RARE TOGETHER	All research levels are welcome.	Registration closed	Rosanne Smits	Rosanne Smits Rosanne.Smits@radboudumc.nl
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
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, claudio.carta@iss.it (in Cc laura.cellai@iss.it)
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 rrodrigo@cipf.es
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 cristina.has@uniklinik-freiburg.de
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
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
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
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
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
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
6-10 June 2022	Barcelona, Spain	EURORDIS Summer School	RD patient representatives and researchers	Registration closed
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
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
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
21-25 March 2022	Online	EURORDIS Winter School		Registration closed
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
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
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
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
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
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 September 2021	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
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
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
March 8-9, 2021	Oslo, Norway	National training on Orphanet nomenclature	Orphanet Norway	Registration closed	Oslo University Hospital	Lene Martinsen
First Semester 2021	Barcelona, Spain	ExPRESS Expert Patients and Researchers EURORDIS Summer School	RD patient representatives and researchers	Registration closed	EURORDIS	Virginie Bros-Facer
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
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

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).