Past EJP RD Events
26
Avr
2024Interim Analysis, Adaptations and Master Protocols
Description will be updated soon. More information on intermediate courses and Clinical Trials Methodology Watch all the intermediate…
- 14:00 - 14:00
- Youtube
11
Avr
20241st PReS ACADEMY COURSE on Non-Infectious Childhood Chronic Uveitis
PReS endorsed the 1st PReS ACADEMY COURSE on Non-Infectious Childhood Chronic Uveitis The educational objective of this course,…
- 12:00 - 16:00 (12 avril 2024)
- Firenze, Italy
05
Avr
2024Early Phase Trial Designs in Rare Diseases
The development of novel therapies for rare diseases involves many challenges due to small and heterogeneous patient populations,…
- 14:00 - 14:00
- Youtube
22
Mar
2024Bayesian Thinking and Methods
In the last two decades, the Bayesian approach has become increasingly popular in virtually all application areas. The…
- 10:00 - 10:00
- Youtube
13
Mar
2024Training on strategies to foster solutions of undiagnosed rare disease cases
13-15 March 2024 REGISTRATION IS NOW OPEN here ONLINE REGISTRATION until 14 January 2024. Registration will remain open…
- 09:30 - 16:00 (15 mars 2024)
- Rome, Italy
08
Mar
2024Statistical Methodology for Very Small (and Very Large) Studies
Using data from various clinical trials and other studies, methodology and statistical concepts are presented that remain solid…
- 10:00 - 10:00
- Youtube
26
Jan
2024Training 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?
GENERAL INFORMATION Marc Van Dijk (UCB) and Luis Pinheiro (EMA) will present views of industry and regulators on…
- 14:00 - 16:00
- Online
13
Déc
2023Managing RD biological sample data in Biobanks: lessons learned from the EJP RD training workshops
General information This training workshop is the conclusive event of a series of capacity building programs on biobanking…
- 14:00 - 14:00 (14 décembre 2023)
- Milan, Italy
20
Nov
2023ERICA & EJP RD Joint Conference
GENERAL INFORMATION A pre-conference dinner on 20th November is to be scheduled. PARTICIPANTS The target audience of this…
- 18:00 - 17:30 (21 novembre 2023)
- Amsterdam UMC, Amsterdam
26
Oct
2023Training for patient representatives and advocates on leadership and communication skills
GENERAL INFORMATION26th – 27th October 2023.All applicants will receive an email on the status of their application (if…
- 09:00 - 18:00 (27 octobre 2023)
- Gdańsk, Poland
18
Oct
2023Quality assurance, variant interpretation and data management in the NGS diagnostics era
GENERAL INFORMATION The 5th International Training Course on “Quality assurance, variant interpretation and data management in the NGS…
- 11:00 - 13:30 (20 octobre 2023)
- Warsaw, Poland
13
Oct
2023EJP RD - ERN Workshop: Advances in regenerative medicine and tissue engineering for rare musculo-skeletal diseases
GENERAL INFORMATION Concept Regenerative medicine and tissue engineering provide strategies to regenerate untreatable diseased organs by either replacing/mimicking…
- 09:00 - 13:00 (14 octobre 2023)
- Rome, Italy
12
Oct
2023EJP RD - ERN Workshop: CDH1 related hereditary diffuse type gastric cancer
GENERAL INFORMATION Concept The hereditary tumour syndrome that correlates with a carriership of a pathogenic CDH1 variant is…
- 09:00 - 17:00 (13 octobre 2023)
- Radboud University Medical Center Nijmegen, Netherlands
29
Sep
2023EJP RD Online Training: Item response models for analysing assessments in rare diseases
PRESENTATION AVAILABLE HERE. GENERAL INFORMATION Clinical outcome assessments (COA), incorporating multiple individual items (i.e., tasks, tests, questions and…
- 16:00 - 18:30
- Online
25
Sep
2023International Summer School on Rare Disease Registries and FAIRification of data
REGISTRATION IS NOW OPEN HERE until 5 July 2023. This course is foreseen as a face-to-face training at…
- 09:30 - 16:00 (29 septembre 2023)
- Rome, Italy
20
Sep
2023EJP RD Variant Prioritization and Enrichment for Rare Diseases Workshop
GENERAL INFORMATION Participants will learn the fundamentals of Whole Exome Sequencing (WES) including terminology, pre and post-alignment processing,…
- 09:00 - 17:30 (22 septembre 2023)
- Istanbul, Turkey
04
Sep
2023EJP RD - ERN Workshop: Urogenital Tissue Engineering from bedside to bench and back
GENERAL INFORMATION Regenerative Medicine aims to address unmet medical needs by combining our body’s own repair abilities with…
- 09:00 - 16:30 (5 septembre 2023)
- Regenerative Medicine Center Utrecht, The Netherlands
06
Juil
2023Brain Metabolism Workshop: From Rare Diseases to Common Biological Pathways
GENERAL INFORMATION Brain metabolism, which has been largely disregarded in the traditional approach to investigating and treating neurological…
- 08:30 - 17:30 (7 juillet 2023)
- Barcelona, Spain (Hybrid)
30
Juin
2023EJP RD Training: Replicated N-of-1 Randomized Controlled Trials for Rare Diseases
GENERAL INFORMATION An N-of-1 trial is defined as a prospective, multiple crossover trial in a single patient. If…
- 16:00 - 18:30
- Online
29
Juin
2023Challenges and barriers for gene therapies in rare neurological disorders: preparing the next generation of clinicians and researchers
GENERAL INFORMATION ConceptAdvances in gene therapies are completely changing the possibilities we used to have to deal with…
- 13:00 - 17:00 (30 juin 2023)
- Barcelona, Spain
28
Juin
2023EJP RD - RD-Connect Genome-Phenome Analysis Platform (GPAP) Webinar
https://www.youtube.com/watch?v=-do0uF-giIg GENERAL INFORMATION Organiser – Centre Nacional d’Anàlisi Genòmica (CNAG-CRG, Barcelona, Spain) This is an introductory webinar to…
- 15:00 - 16:00
- Online
21
Juin
2023Paediatric Expert Patients Training Workshop
Are you an adolescent aged from 12 to 18 years old with an interest in health, biomedical research,…
- 09:00 - 17:00 (23 juin 2023)
- Barcelona, Spain
12
Juin
2023ERN biological samples in Rare Diseases research: Added value and usefulness
General informationThe Rare disease (RD) field benefits from national and international multidisciplinary collaborations to face the challenges in…
- 14:00 - 12:00 (14 juin 2023)
- Madrid, Spain
08
Juin
2023EJP RD - ERN Workshop: The Blood-Brain Barrier: current research and novel therapeutic crossing approaches
GENERAL INFORMATION ConceptThe normal functioning of the brain and the central nervous system is protected by the blood-brain…
- 14:30 - 13:00 (9 juin 2023)
- Padua, Italy
04
Juin
2023EJP RD - ERN Workshop on Fetal and Postnatal multidisciplinary management in RD (Myelomeningocele and Lower urinary tract obstruction, LUTO)
ORGANIZERS Giovanni Mosiello, MD, FEAPU, FEBPS, Department of Urology: Neuro- Urology, Bambino Gesù Pediatric and Research Hospital, Rome…
- 18:00 - 13:00 (6 juin 2023)
- Krakow, Poland
01
Juin
2023Kleefstra Syndrome Scientific Conference 2023
The Kleefstra Syndrome Scientific Conference 2023: “Moving towards the uptake and use of Artificial Intelligence (AI) in research and…
- 09:30 - 16:00 (2 juin 2023)
- Hybrid (Online and Ljubljana, Slovenia)
25
Mai
2023EJP RD - ERN Workshop: Young Investigator Workshop on Basic Science and Translational Immunology in PSC
GENERAL INFORMATION ConceptIn order to promote the engagement of young investigators into Primary Sclerosing Cholangitis (PSC) research and…
- 09:00 - 17:00 (26 mai 2023)
- Hamburg, Germany
22
Mai
2023EJP RD ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach
General Information Concept and aimDT is defined as a rare benign monoclonal fibroblastic proliferation that arises in soft…
- 10:30 - 17:00 (23 mai 2023)
- Milan, Italy
18
Mai
2023EJP RD - ERN Workshop: Genetics and Precision Medicine in Rare Diseases
GENERAL INFORMATION ConceptPrecision medicine is an emerging approach to clinical research and patient care based on patient-individual medical…
- 14:30 - 15:30 (19 mai 2023)
- Lisbon, Portugal
08
Mai
2023EJP RD - ERN Workshop: RARE TOGETHER
GENERAL INFORMATION Psychosocial needs play an important role in rare diseases. There are common burdensome and stressful events…
- 10:00 - 16:00 (9 mai 2023)
- Nijmegen, Netherlands
27
Avr
2023EJP RD - ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)
GENERAL INFORMATION ConceptAfter more than 20 years of Hereditary breast and ovarian cancer (HBOC) research in Latvia it…
- 09:00 - 13:30 (28 avril 2023)
- Riga, Latvia
03
Avr
2023Training on strategies to foster solutions of undiagnosed rare disease cases
Registration is now open here for the reserve list only until 2 March 2023.An e-mail will be sent by 3…
- 09:30 - 16:30 (5 avril 2023)
- Rome, Italy
27
Mar
2023EJP RD - ERN Workshop: New Therapeutical Approaches for Inherited Retinal Dystrophies
GENERAL INFORMATION ConceptInherited retinal dystrophies (IRDs) constitute a heterogeneous group of retinal diseases that cause the progressive loss…
- 09:30 - 17:00 (28 mars 2023)
- Valencia, Spain
24
Mar
2023Statistical and operational challenges with master protocols
https://www.youtube.com/watch?v=0nF8a2RPeKA General Information During this webinar, we will explain what is meant by master protocols comparing basket, umbrella…
- 16:00 - 18:30
- Online
23
Mar
2023EJP RD - ERN Workshop: Epidermolysis bullosa: from genes to translation into therapies
GENERAL INFORMATION Concept: Epidermolysis bullosa (EB) is a group of genetic disorders that manifest with fragility of the…
- 13:00 - 16:00 (24 mars 2023)
- Freiburg, Germany
15
Mar
2023RE(ACT) Congress and IRDiRC Conference 2023
EJP RD is pleased to announce that the next edition of the 7th RE(ACT) Congress and 5th IRDiRC Conference will…
- 13:30 - 12:30 (18 mars 2023)
- Berlin, Germany
28
Fév
2023ERICA WP4 Webinar: Essential requirements before thinking about a clinical trial
The European Rare Disease Research Coordination and Support Action consortium (ERICA) is organising the WP4 Clinical Trial Support webinar “Essential…
- 12:00 - 13:00
- Online
15
Déc
2022XV Foresight Training Course
Fondazione Gianni Benzi Onlus is jointly organising with Università degli Studi di Bari Aldo Moro the XV Foresight…
- 17:00 - 16:10 (16 décembre 2022)
- Bari, Italy
01
Déc
2022International Conference on Clinical Research Networks for Rare Diseases
General information Dates Registration Contact Agenda Biosketches General information The International Rare Diseases Research Consortium (IRDiRC) and the…
- 13:45 - 14:00 (2 décembre 2022)
- Online
28
Nov
2022EJP RD Training: Biobanking in rare diseases: the Poland experience
GENERAL INFORMATION Through the last decade access to modern healthcare has improved significantly. The lack of scientific knowledge…
- 14:00 - 17:45 (29 novembre 2022)
- Online
18
Nov
2022The Statistical Evaluation of Surrogate Endpoints in Clinical Trials
https://www.youtube.com/watch?v=G0qers1DACk General information Both humanitarian and commercial considerations have spurred intensive search for methods to reduce the time…
- 16:00 - 18:30
- Online
10
Nov
2022Training for patient representatives and advocates on leadership and communication skills
IMPORTANT INFORMATIONThe training course will be held in an ONLINE FORMAT, given the uncertainties linked to the evolution…
- 09:30 - 17:30 (11 novembre 2022)
- Online
05
Nov
2022Rhabdoid tumors in clinic and research: From basic biology to the patient bed
GENERAL INFORMATION ConceptIn this workshop we would like to give a state-of the-art overview on clinical and molecular…
- 07:30 - 15:45
- Charenton-le-Pont, France
19
Oct
2022Quality assurance, variant interpretation and data management in the NGS diagnostics era
GENERAL INFORMATION Due to the force majeure situation and in order to ensure the correct progress of the planned tasks of EJP…
- 10:00 - 14:00 (21 octobre 2022)
- ONLINE
13
Oct
2022Rare Conversations – Rare Disease Policies: Pioneering the way towards a resilient ecosystem
EJP RD is glad to partner with Alexion’s annual Rare Conversations conference, “Rare Disease Policies: Pioneering the way…
- 14:00 - 18:00
- Brussels, Belgium
29
Sep
2022Comprehensive gene profiling, molecular tumor board (mtb) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers
All times are in EEST (Eastern European Summer Time) GENERAL INFORMATION Increased knowledge of cancer molecular biology and…
- 09:00 - 16:00 (30 septembre 2022)
- Turku, Finland
26
Sep
2022International Summer School on Rare Disease Registries and FAIRification of data
REGISTRATION IS NOW OPEN HERE until the 29th of May 2022. IMPORTANT INFORMATIONThe training course will be held in an ONLINE…
- 13:30 - 17:10 (30 septembre 2022)
- Online
26
Août
2022Networking Support Scheme (NSS) Event: Argonautes Syndrome Science & Family Conference
A funded networking event, the first Argonaute Syndrome Science & Family conference, is being organized to bring together…
- 18:00 - 13:00 (28 août 2022)
- Online and Regensburg, Germany
04
Juil
2022Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases
GENERAL INFORMATION ConceptThe study of rare and complex diseases affects the sample size of the study population.Undoubtedly the…
- 09:00 - 18:00 (5 juillet 2022)
- Bari, Italy
30
Juin
2022EJP RD - ERICA Workshop: Ethics and regulatory considerations for ERN Data Access Committee members
We are happy to invite you to take part in a workshop addressing “Ethics and regulatory considerations for ERN…
- 10:00 - 12:30
- Online
27
Juin
202211th European Conference on Rare Diseases and Orphan Products (ECRD) 2022
The 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022 is being organized by EURORDIS and co-organized by Orphanet, with…
- 14:00 - 18:00 (1 juillet 2022)
- Online
20
Juin
2022Networking Support Scheme (NSS) event: European meeting on Phelan-McDermid syndrome
A funded networking event “European meeting on Phelan-McDermid syndrome” is being organised to discuss the guideline recommendations and to…
- 13:00 - 13:00 (22 juin 2022)
- Groningen, Netherlands
17
Juin
2022Networking Support Scheme (NSS) event: 3rd International Symposium on Wiskott Aldrich Syndrome (WAS2022)
A funded networking event “3rd International Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome (WAS2022)” is being…
- 09:00 - 18:00
- Munich, Germany
17
Juin
2022Networking Support Scheme (NSS) event: 2nd International Congress on Biliary Atresia and Related Diseases (BARD)
A funded networking event “2nd International Congress on Biliary Atresia and Related Diseases (BARD)” is being organised to…
- 09:00 - 17:00 (18 juin 2022)
- Bruges, Belgium
14
Juin
2022Genetic biobanks for Rare Disease Research
GENERAL INFORMATION Rare disease (RD) is one area where national and international multidisciplinary collaborations are valuable to overcome…
- 09:00 - 17:00 (15 juin 2022)
- Online
14
Juin
2022EJP RD ERN Workshop: Functional exploration of genetic variants in cardiac diseases
Registration has been extended until 20 May 2022 -12hCEST GENERAL INFORMATION ConceptCardiomyopathies and channelopathies are severe and misunderstood…
- 09:00 - 17:00 (15 juin 2022)
- Lyon, France
10
Juin
2022Ectodermal dysplasias: Training course and update
GENERAL INFORMATION ConceptEctodermal dysplasias (ED) are rare and orphan genetic conditions affecting the development and/or homeostasis of two…
- 09:30 - 18:15
- Paris, France
09
Juin
2022EJP RD ERN Workshop: Translational research on bone impairment in rare diseases
GENERAL INFORMATION ConceptBone impairment in rare diseases can affect many patients. Indeed, this concerns a vast number of…
- 10:00 - 12:35 (10 juin 2022)
- Faculty of Medicine of Lyon, France
31
Mai
2022ProDGNE Meeting 2022
The ProDGNE consortium is organising the ProDGNE Meeting 2022, a multi-stakeholder opportunity to meet in person, discuss impactful research in GNE Myopathy…
- 09:30 - 18:30
- Sala Ágora, NOVA School of Science and Technology, FCT NOVA Caparica, Portugal
30
Mai
2022From high throughput sequencing to diagnosis in immune mediated disorders ESID/ERN-RITA Workshop
GENERAL INFORMATION ConceptInborn errors of immunity (IEI) manifest as increased susceptibility to severe and/or recurrent infectious diseases, autoimmune…
- 08:00 - 16:00 (31 mai 2022)
- Paris, France
27
Mai
2022Regional Cooperation: Conference on new concepts and approaches in lymphoma
A funded networking event “Regional Cooperation: Conference on new concepts and approaches in lymphoma” is being organised in…
- 10:00 - 14:15 (29 mai 2022)
- Belgrade, Serbia
27
Mai
20221st Workshop on Familial Adult Myoclonic Epilepsy (FAME)
Familial Adult Myoclonic Epilepsy (FAME) is a rare genetic condition, characterized by the occurrence of cortical tremor, myoclonus,…
- 09:00 - 13:30 (28 mai 2022)
- Naples, Italy
06
Mai
2022Composite endpoints including patient relevant endpoints (Quality of Life)
https://www.youtube.com/watch?v=VkVaaCRClgs GENERAL INFORMATION When assessing the efficacy of a treatment in any clinical trial, it is recommended by…
- 16:00 - 18:30
- Online
04
Mai
2022Endocrine cancer: a challenge in adults and children
GENERAL INFORMATION ConceptThe term endocrine cancer involves, among others, thyroid carcinoma, adrenocortical carcinoma, malignant pheochromocytomas and paragangliomas, and…
- 14:00 - 18:15
- Maria Sklodowska-Curie National Research Institute of Oncology Gliwice, Poland
29
Avr
2022Networking Support Scheme (NSS) event: TREAT AIE European Conference on Autoimmune Encephalitis
A funded networking event “Treat AIE: First European networking conference to provide guidelines and improve treatment of Autoimmune…
- 14:00 - 13:00 (30 avril 2022)
- Hybrid (Online and Florence, Italy)
27
Avr
2022European Forum on Visceral Myopathy 2022
A funded networking event “European Forum on Visceral Myopathy 2022” is being organised in Camogli, Italy.This event has…
- 20:00 - 12:45 (29 avril 2022)
- Camogli, Italy
11
Avr
2022Training on strategies to foster solutions of undiagnosed rare disease cases
11– 13 April 2022. This course is online with a web-conferencing format. REGISTRATION IS NOW CLOSED. An e-mail…
- 09:45 - 16:45 (13 avril 2022)
- Online
02
Avr
2022Networking Support Scheme (NSS) event: International Vasculitis Patient Conference 2022
A funded networking event “International Vasculitis Patient Conference” is being organised as a satellite hybrid event to the 20th International ANCA Vasculitis Workshop…
- 14:00 - 17:45 (4 avril 2022)
- Dublin, Ireland (and online)
31
Mar
2022Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment
GENERAL INFORMATION Spinal Dysraphism (Spina Bifida) is a congenital malformation that virtually involves all systems in the human…
- 08:15 - 13:10 (1 avril 2022)
- Centre Hospitalier Universitaire de Rennes (2 Rue Henri le Guilloux, 35033 Rennes, FRANCE)
04
Mar
2022Contemporary outcome measures in neuromuscular diseases
GENERAL INFORMATION ConceptImproving clinical outcomes remains the gold standard in advancing healthcare. The only way to successfully manage…
- 11:30 - 17:35 (5 mars 2022)
- Hotel Novotel Nice Centre Vieux-Nice, Nice, France
24
Fév
2022Networking event – The anti-IgLON5 disease: Challenges in diagnosis, treatment and pathogenesis of the disease
An EJP RD funded networking event on the rare neurological disease caused by anti-IgLON5 antibodies, discovered in 2014…
- 09:00 - 12:40 (25 février 2022)
- Esteve Auditorium of the Esther Koplowitz Cente
03
Fév
2022Networking Support Scheme (NSS) event on vascular liver diseases and associated complications
A funded networking event on vascular liver diseases and associated complications is being organised to give an update on current clinical…
- 12:00 - 15:15 (4 février 2022)
- Hybrid (Online and Medical University Vienna, Vienna, Austria)
16
Déc
2021Information webinar on Joint Transnational Call 2022
Following the successful implementation of three Joint Transnational Calls since 2019, EJP RD is glad to announce the upcoming…
- 14:00 - 15:30
- Online
15
Déc
2021Resource Webinar: INFRAFRONTIER - Bis
Speaker: Montse Gustems Date: 15th December 2021 Start time: 15:00 CET End time: 16:00 CET Location: Online Registration…
- 15:00 - 16:00
- Online
15
Déc
2021Anonymisation and pseudonymisation of rare disease patients: Legal and technical aspects
Topic: Anonymisation and pseudonymisation of rare disease patients: legal and technical aspects Date and Time: December 15th, 2021 from 15.00 – 16.00…
- 15:00 - 16:00
- Online
14
Déc
2021EJP RD TRAINING WEBINAR: Does Randomization matter in RD clinical trials?
https://www.youtube.com/watch?v=7rmrN2Cs6C4 General information Rare Diseases (RD) is an area where national and international multidisciplinary collaborations are valuable to…
- 16:00 - 18:30
- Online
09
Déc
2021EJP RD and ERICA meeting on Domain specific Common Data Elements (DCDEs) Curation
EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and…
- 16:00 - 17:00
- Online
26
Nov
2021First paediatric expert patients training workshop
DEADLINE EXTENDED: 5 NOVEMBER 2021 Are you an adolescent aged from 12 to 18 interested in the themes…
- 15:00 - 17:30
- Online
25
Nov
2021Resource Webinar: Orphanet
Speaker: TBD Date: 25th November Registration link to receive connection details Platform Summary: Orphanet is a unique resource, gathering and improving knowledge on…
- 15:00 - 16:00
- Online
18
Nov
20211st International Conference on Rare Diseases and Paediatric Research
The 1st International Conference on Rare Diseases and Paediatric Research is being organized by 95, Rare Alliance Greece together with Consorzio…
- 08:30 - 16:30 (19 novembre 2021)
- Online
09
Nov
2021Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward
EJP RD is co-organising the “Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward” conference in cooperation with Alexion, EURORDIS, EUCOPE, and EuropaBio.…
- 14:00 - 18:00
- Online
04
Nov
2021Drug repurposing for rare disease workshop series - part 3
EJP RD is co-organising a series of 3 workshops dedicated to drug repurposing for rare disease. Registration is…
- 15:00 - 17:00
- Online
28
Oct
2021Drug repurposing for rare disease workshop series - part 2
EJP RD is co-organising a series of 3 workshops dedicated to drug repurposing for rare disease. Registration is…
- 15:00 - 17:00
- Online
27
Oct
2021Resource Webinar: Sample Catalogue & BBMRI-ERIC Directory & Negotiator
Speaker: Esther van Enckevort Date: 27th October Registration link to receive connection details Platform Summary: The Sample Catalogue provides an overview of biological…
- 15:00 - 16:00
- Online
27
Oct
2021Quality assurance, variant interpretation and data management in the NGS diagnostics era
3rd Training Course“Quality assurance, variant interpretation and data management in the NGS diagnostics era”October 27 –29, 2021Istituto Superiore di Sanità, Rome, Italy…
- 10:00 - 16:30 (29 octobre 2021)
- ONLINE
25
Oct
2021Training: Pluripotent stem cells for rare disease research: banking, data, application
Registration is open here. Registration deadline: September 27th General information Rare disease (RD) is one area…
- 13:30 - 11:45 (27 octobre 2021)
- Online
21
Oct
2021Drug repurposing for rare disease workshop series - part 1
EJP RD is co-organising a series of 3 workshops dedicated to drug repurposing for rare disease. Registration is…
- 15:00 - 17:00
- Online
14
Oct
2021Resource Webinar: European Paediatric Translational Research Infrastructure (EPTRI)
Speakers: Valeria Pignataro, Piotr Socha, Maria Grazia Felisi, Elisa Alessandrini, Udo Markert Date: 14th October Registration is open…
- 15:00 - 16:00
- Online
30
Sep
2021Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs
Organiser – Olaf Dekkers30 September – 1 October 2021Leiden, the Netherlands GENERAL INFORMATION Research on rare conditions…
- 14:00 - 15:00 (1 octobre 2021)
- Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, The Netherlands
30
Sep
2021GATA2-related Myelodysplastic Syndromes
GATA2-related Myelodysplastic Syndromes Dates: September 30th and October 1st 2021REGISTRATION DEADLINE: SEPTEMBER 10ThVenue: Athena, GreeceOrganizer: Department of Pediatric…
- 13:00 - 15:00 (1 octobre 2021)
- Hybrid
27
Sep
2021International Summer School on Rare Disease Registries and FAIRification of Data
International Summer School on Rare Disease Registries and FAIRification of Data September 27 – October 1, 2021 Istituto…
- 14:00 - 17:10 (1 octobre 2021)
- ONLINE
20
Sep
2021Resource Webinar: European Genome-Phenome Archive (EGA)
Speaker: Giselle Kerry (TBC) Date: 20th September Registration link to receive connection details Platform Summary: The EGA provides a service for the…
- 15:00 - 16:00
- Online
10
Sep
2021Online Training Orphanet nomenclature and Orphanet Rare Disease Ontology - ORDO for clinicians/researchers
Online Training Orphanet nomenclature and Orphanet Rare Disease Ontology – ORDO for clinicians/researchers 10 September 2021 – Online…
- 10:30 - 16:45
- Online
10
Sep
2021SCN8A & SCN2A Conference & family gathering
The first ever European SCN8A & SCN2A Conference takes place at the University of Bonn (10th-11th September 2021)…
- 09:00 - 15:30 (11 septembre 2021)
- University of Bonn, Germany (and online livestream)
09
Sep
2021Advances in diagnostic and therapeutic methods for lymph flow abnormalities
Organiser – Dr Willemijn M. Klein9th and 10th Sept 2021Will now be conducted online (due to the Covid-19…
- 09:00 - 17:00 (10 septembre 2021)
- Online (due to the Covid-19 situation)
31
Juil
2021Networking Support Scheme (NSS) Event: 5th European Aniridia Conference
The 5th European Aniridia Conference is being organised to enable the sharing of scientific knowledge about the rare genetic eye condition aniridia to prevent…
- 10:00 - 18:30 (1 août 2021)
- Online
22
Juil
2021Resource Webinar: MetaboLights
Due to an unexpected event, this webinar is postponed to a later date that will be communicated soon.…
- 15:00 - 16:00
- Online
08
Juil
2021Alignment of national rare diseases strategies with the European Joint Programme on Rare Diseases
Registration deadline: July 3rd Introduction Objectives Target Audience Registration Agenda Introduction The European Joint Programme on Rare Diseases (EJP RD) is based…
- 09:30 - 17:00
- ONLINE
07
Juil
2021EJP RD Advisory Committee for Therapeutics (ACT) workshop (ERN-focused event)
Organiser – Newcastle University ONLINE 7th-8th July 2021 GENERAL INFORMATION The main objective of this workshop is to demonstrate the benefits…
- 14:00 - 15:00 (8 juillet 2021)
- Online
01
Juil
2021Webinar: Digitalization of the inborn errors of metabolism pathways from Blau et al.
Speaker: Denise Slenter (Department of Bioinformatics, Maastricht University) Date: 1st July Registration link to receive connection details Description: In…
- 15:00 - 16:00
- Online
21
Juin
2021Resource Webinar: hPSCreg
Speaker: Nancy Mah Date: 21st June Registration link to receive connection details Platform Summary: The human pluripotent stem cell registry (hPSCreg: https://hpscreg.eu/) maintains a…
- 15:00 - 16:00
- Online
27
Mai
2021Resource Webinar: DECIPHER
Speaker: Julia Foreman Date: 27th May Registration link to receive connection details Platform Summary: DECIPHER is an online data-sharing platform facilitating the…
- 15:00 - 16:00
- Online
10
Mai
2021Rare Disease Biobanks: Roles in Research Networks and International Collaborations
10-11 May 2021 – Online Training REGISTRATION Online registration form Registration deadline is 13 April 2021 IMPORTANT: To ensure…
- 12:30 - 15:00 (11 mai 2021)
- Online
30
Avr
2021EJP RD Technical Hands-on Workshops: GA4GH Phenopackets
15:00 – 17:00 CEST (14:00 – 16:00 BST, 09:00 – 11:00 EDT, 22:00 – 00:00 JST), online public…
- 15:00 - 17:00
- Online
26
Avr
2021Resource Webinar: Cellosaurus
Speaker: Amos Bairoch Date: 26th April Platform Summary: Cell line knowledge resource. While the Cellosaurus caters for all kind of cell lines,…
- 15:00 - 16:00
- Online
12
Avr
2021Training on Strategies to foster solutions of undiagnosed rare disease cases
12 – 14 April 2021. This workshop is online with a web-conferencing format. REGISTRATION IS NOW OPEN HERE…
- 09:30 - 17:30 (14 avril 2021)
- Online
25
Mar
2021Supporting the innovation and exploitation activities of transnational research projects on rare diseases - an EJP RD and EC Webinar
We are pleased to invite you to the webinar co-organised by EJP RD and the European Commission that…
- 10:00 - 11:15
24
Mar
2021Resource Webinar: INFRAFRONTIER
Speaker: Montse Gustems Date: 24th of March, 2021 Registration link to receive connection details Platform summary: INFRAFRONTIER is the European…
- 15:00 - 16:00
- Online
28
Fév
2021Rare Disease Day Video
As every year, February is rare disease month which ends on the 28th with Rare Disease Day. Multiple events will…
- 10:00 - 18:00
- Online
13
Jan
2021RE(ACT) Congress & IRDiRC Conference 2021
EJP RD is glad to be a part of the organisation of the RE(ACT) Congress and IRDiRC Conference joint online event that will take…
- 09:00 - 17:00 (15 janvier 2021)
- Online
12
Jan
2021EJP RD Policy Meeting
On the 12th and 13th of January, The European Joint Programme on Rare Diseases (EJP RD) held its…
- 13:00 - 12:00 (11 janvier 2021)
- Online