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PATIENTS IN RESEARCH
VIRTUAL PLATFORM OF DATA AND RESOURCES
What is the virtual platform?
Resources for RD Research
FAIRification
Services and Events
TRAINING & EDUCATION
General Information on Training
RD Research Training
Patients Training
ERN Workshops
Online Academic Education Course
Fellows
RESEARCH TRANSLATION SUPPORT OFFICE
Innovation Management Toolbox
Mentoring for Translational Research
Follow-on funding support
CLINICAL STUDIES SUPPORT OFFICE
Support office
Rare Diseases Clinical Trials Toolbox
Clinical Trials Methodology
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Introduction to AREB
Key Ethics & Regulatory Documents
ERN Registries Generic Informed Consent Forms
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ERDERA
Past EJP RD Events
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Past EJP RD Events
Training for Resources joining the Rare Diseases Virtual Platform
Online
28 juin 2024
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End-user Training for the EJP RD Virtual Platform
Online
26 juin 2024
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EJP RD Final Conference
Hybrid (Online and Bari, Italy)
27 mai 2024
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Key Solutions to Model Longitudinal Natural History Data Application in Ataxia Disease
Youtube
17 mai 2024
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Save the date: 12th European Conference on Rare Diseases and Orphan Products (ECRD)
Brussels, Belgium
15 mai 2024
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Interim Analysis, Adaptations and Master Protocols
Youtube
26 avril 2024
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1st PReS ACADEMY COURSE on Non-Infectious Childhood Chronic Uveitis
Firenze, Italy
11 avril 2024
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Early Phase Trial Designs in Rare Diseases
Youtube
5 avril 2024
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Bayesian Thinking and Methods
Youtube
22 mars 2024
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Training on strategies to foster solutions of undiagnosed rare disease cases
Rome, Italy
13 mars 2024
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Statistical Methodology for Very Small (and Very Large) Studies
Youtube
8 mars 2024
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Training 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?
Online
26 janvier 2024
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Managing RD biological sample data in Biobanks: lessons learned from the EJP RD training workshops
Milan, Italy
13 décembre 2023
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ERICA & EJP RD Joint Conference
Amsterdam UMC, Amsterdam
20 novembre 2023
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Training for patient representatives and advocates on leadership and communication skills
Gdańsk, Poland
26 octobre 2023
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Quality assurance, variant interpretation and data management in the NGS diagnostics era
Warsaw, Poland
18 octobre 2023
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EJP RD - ERN Workshop: Advances in regenerative medicine and tissue engineering for rare musculo-skeletal diseases
Rome, Italy
13 octobre 2023
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EJP RD - ERN Workshop: CDH1 related hereditary diffuse type gastric cancer
Radboud University Medical Center Nijmegen, Netherlands
12 octobre 2023
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EJP RD Online Training: Item response models for analysing assessments in rare diseases
Online
29 septembre 2023
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International Summer School on Rare Disease Registries and FAIRification of data
Rome, Italy
25 septembre 2023
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EJP RD Variant Prioritization and Enrichment for Rare Diseases Workshop
Istanbul, Turkey
20 septembre 2023
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EJP RD - ERN Workshop: Urogenital Tissue Engineering from bedside to bench and back
Regenerative Medicine Center Utrecht, The Netherlands
4 septembre 2023
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Brain Metabolism Workshop: From Rare Diseases to Common Biological Pathways
Barcelona, Spain (Hybrid)
6 juillet 2023
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The 9th Rare Disease Summer School
Kartause Ittingen, Warth (Canton Thurgau)
4 juillet 2023
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EJP RD Training: Replicated N-of-1 Randomized Controlled Trials for Rare Diseases
Online
30 juin 2023
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Challenges and barriers for gene therapies in rare neurological disorders: preparing the next generation of clinicians and researchers
Barcelona, Spain
29 juin 2023
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EJP RD - RD-Connect Genome-Phenome Analysis Platform (GPAP) Webinar
Online
28 juin 2023
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Paediatric Expert Patients Training Workshop
Barcelona, Spain
21 juin 2023
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IHI Call Days - calls 4 & 5
Online
19 juin 2023
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ERN biological samples in Rare Diseases research: Added value and usefulness
Madrid, Spain
12 juin 2023
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EJP RD - ERN Workshop: The Blood-Brain Barrier: current research and novel therapeutic crossing approaches
Padua, Italy
8 juin 2023
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Duchenne Care Conference 2023
Online
7 juin 2023
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EJP RD - ERN Workshop on Fetal and Postnatal multidisciplinary management in RD (Myelomeningocele and Lower urinary tract obstruction, LUTO)
Krakow, Poland
4 juin 2023
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Kleefstra Syndrome Scientific Conference 2023
Hybrid (Online and Ljubljana, Slovenia)
1 juin 2023
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EJP RD - ERN Workshop: Young Investigator Workshop on Basic Science and Translational Immunology in PSC
Hamburg, Germany
25 mai 2023
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EJP RD ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach
Milan, Italy
22 mai 2023
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EJP RD - ERN Workshop: Genetics and Precision Medicine in Rare Diseases
Lisbon, Portugal
18 mai 2023
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EJP RD - ERN Workshop: RARE TOGETHER
Nijmegen, Netherlands
8 mai 2023
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Implementation of co-funded European Partnerships
Online
27 avril 2023
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EJP RD - ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)
Riga, Latvia
27 avril 2023
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Training on strategies to foster solutions of undiagnosed rare disease cases
Rome, Italy
3 avril 2023
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EJP RD - ERN Workshop: New Therapeutical Approaches for Inherited Retinal Dystrophies
Valencia, Spain
27 mars 2023
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Statistical and operational challenges with master protocols
Online
24 mars 2023
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EJP RD - ERN Workshop: Epidermolysis bullosa: from genes to translation into therapies
Freiburg, Germany
23 mars 2023
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1st International CTNNB1 Syndrome Conference
Madrid, Spain
23 mars 2023
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Transition of care for patients with rare liver disease throughout Europe: bridging the gap
Ghent, Belgium
17 mars 2023
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EJP RD Networking Symposium: Complex genetics of inherited arrhythmias
Amsterdam, The Netherlands
16 mars 2023
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RE(ACT) Congress and IRDiRC Conference 2023
Berlin, Germany
15 mars 2023
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Redo Surgery for Pull-Through in Hirschsprung's Disease: When and How
Online
7 mars 2023
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Third International Summit on Human Genome Editing
London, United Kingdom
6 mars 2023
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#SeeRare - the global Rare Disease Day event
Online
28 février 2023
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ERICA WP4 Webinar: Essential requirements before thinking about a clinical trial
Online
28 février 2023
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Webinar: Primary Obstructive Megaureter (POM): Predictors of Success and Failure after Balloon Dilatation
Online
22 février 2023
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TMEX – TRANSLATIONAL MEDICINE EXPLAINED 5 DAY WINTER SCHOOL 2023
Barcelona, Spain
13 février 2023
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Team-Retreat-Coo
31 janvier 2023
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XV Foresight Training Course
Bari, Italy
15 décembre 2022
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European Union (EU) Health Summit – Rare Diseases Moonshot launch
Brussels
8 décembre 2022
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International Conference on Clinical Research Networks for Rare Diseases
Online
1 décembre 2022
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EJP RD Training: Biobanking in rare diseases: the Poland experience
Online
28 novembre 2022
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CHIST-ERA ERA-NET Call ORD Information Webinar #2
Online
28 novembre 2022
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The Statistical Evaluation of Surrogate Endpoints in Clinical Trials
Online
18 novembre 2022
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Training for patient representatives and advocates on leadership and communication skills
Online
10 novembre 2022
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Rhabdoid tumors in clinic and research: From basic biology to the patient bed
Charenton-le-Pont, France
5 novembre 2022
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ERICA webinar: Practical guide on how to use the Catalogue of services and the IMT
Online
24 octobre 2022
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Quality assurance, variant interpretation and data management in the NGS diagnostics era
ONLINE
19 octobre 2022
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Rare Conversations – Rare Disease Policies: Pioneering the way towards a resilient ecosystem
Brussels, Belgium
13 octobre 2022
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Innovation Bootcamp in Rare Diseases 2022 (IBRD2022) Congress
Brussels, Belgium
11 octobre 2022
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ANR ICPerMed Conference: Prelude to the Future of Medicine
Paris, France; and online
5 octobre 2022
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ECRIN NSS Meeting: Identifying obstacles hindering the development of academic-sponsored trials for drug repurposing on rare-diseases
Prague, Czech Republic
4 octobre 2022
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CHIST-ERA ERA-NET Call ORD Information Webinar #1
Online
3 octobre 2022
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Comprehensive gene profiling, molecular tumor board (mtb) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers
Turku, Finland
29 septembre 2022
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RDI-WHO Webinar: The International Classification of Diseases
Online
27 septembre 2022
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International Summer School on Rare Disease Registries and FAIRification of data
Online
26 septembre 2022
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ERN eUROGEN webinar: Proximal Hypospadias: Challenges in Surgical Management
Online
14 septembre 2022
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International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders
Rome, Italy (with virtual attendance options)
14 septembre 2022
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WORLD DUCHENNE AWARENESS DAY 2022: Duchenne and Women
Online
7 septembre 2022
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Networking Support Scheme (NSS) Event: Argonautes Syndrome Science & Family Conference
Online and Regensburg, Germany
26 août 2022
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General Assembly of TEDDY Network
Online
7 juillet 2022
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ERN eUROGEN webinar: Williams-Beuron Syndrome: A Focus on Long-Term Patient Care
Online
6 juillet 2022
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Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases
Bari, Italy
4 juillet 2022
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Networking Support Scheme (NSS) event: Taking congenital portosystemic shunts (CPSS) to the next level
Hybrid (Online and Geneva, Switzerland)
1 juillet 2022
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EJP RD - ERICA Workshop: Ethics and regulatory considerations for ERN Data Access Committee members
Online
30 juin 2022
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ERN eUROGEN webinar: Summer ’22 Update
Online
29 juin 2022
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11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022
Online
27 juin 2022
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Networking Support Scheme (NSS) event: European meeting on Phelan-McDermid syndrome
Groningen, Netherlands
20 juin 2022
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Networking Support Scheme (NSS) event: 2nd International Congress on Biliary Atresia and Related Diseases (BARD)
Bruges, Belgium
17 juin 2022
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Networking Support Scheme (NSS) event: 3rd International Symposium on Wiskott Aldrich Syndrome (WAS2022)
Munich, Germany
17 juin 2022
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Innovative Health Initiative (IHI) Kick-off and brokerage event
Brussels, Belgium and Online
14 juin 2022
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Genetic biobanks for Rare Disease Research
Online
14 juin 2022
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EJP RD ERN Workshop: Functional exploration of genetic variants in cardiac diseases
Lyon, France
14 juin 2022
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Ectodermal dysplasias: Training course and update
Paris, France
10 juin 2022
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EJP RD ERN Workshop: Translational research on bone impairment in rare diseases
Faculty of Medicine of Lyon, France
9 juin 2022
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1st World Congress on Rare Skin Diseases
Paris, France
7 juin 2022
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ProDGNE Meeting 2022
Sala Ágora, NOVA School of Science and Technology, FCT NOVA Caparica, Portugal
31 mai 2022
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From high throughput sequencing to diagnosis in immune mediated disorders ESID/ERN-RITA Workshop
Paris, France
30 mai 2022
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Regional Cooperation: Conference on new concepts and approaches in lymphoma
Belgrade, Serbia
27 mai 2022
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1st Workshop on Familial Adult Myoclonic Epilepsy (FAME)
Naples, Italy
27 mai 2022
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NIH/FDA Virtual Workshop on Regulatory Fitness in Rare Disease Clinical Trials
Online
16 mai 2022
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Composite endpoints including patient relevant endpoints (Quality of Life)
Online
6 mai 2022
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Endocrine cancer: a challenge in adults and children
Maria Sklodowska-Curie National Research Institute of Oncology Gliwice, Poland
4 mai 2022
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Networking Support Scheme (NSS) event: TREAT AIE European Conference on Autoimmune Encephalitis
Hybrid (Online and Florence, Italy)
29 avril 2022
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European Forum on Visceral Myopathy 2022
Camogli, Italy
27 avril 2022
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Share4Rare webinar: Medical imaging in rare disease diagnosis
Online
20 avril 2022
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Chan Zuckerberg Initiative Networking Expo for Patient-Partnered Collaborations (PPC) for Rare Disease
Online
20 avril 2022
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Training on strategies to foster solutions of undiagnosed rare disease cases
Online
11 avril 2022
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Joint EMA/HMA/TEHDAS Data Quality Framework for Medicines workshop
Online
7 avril 2022
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Rare Conversations 2022 Webinar Episode 1: Game changing opportunities for the R&D community to address existing challenges in rare diseases
Online
6 avril 2022
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Networking Support Scheme (NSS) event: International Vasculitis Patient Conference 2022
Dublin, Ireland (and online)
2 avril 2022
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Networking Support Scheme (NSS) event: European Dravet Syndrome Advanced Therapies Meeting (EDSAT)
Madrid, Spain
1 avril 2022
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Dravet Syndrome Foundation Scientific and Family Days 2022
Madrid, Spain
31 mars 2022
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Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment
Centre Hospitalier Universitaire de Rennes (2 Rue Henri le Guilloux, 35033 Rennes, FRANCE)
31 mars 2022
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Webinar: IMI impact on SMEs in health data management and health IT sectors
Online
29 mars 2022
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16th Genomics of Rare Disease Virtual Conference
Online
28 mars 2022
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Online events for 2023 Third International Summit on Human Genome Editing
Online
7 mars 2022
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Contemporary outcome measures in neuromuscular diseases
Hotel Novotel Nice Centre Vieux-Nice, Nice, France
4 mars 2022
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2nd International Conference on Rare Diseases: Greek Chapter
Online
1 mars 2022
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PFUE 2022 Scientific Symposium on Rare Diseases
Hybrid: Online and at Ministry of Solidarity and Health (Conference Room Laroque), 14 Avenue Duquesne, 75007 Paris, France
28 février 2022
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Rare Disease Day 2022 at the World Expo Dubai
Sweden Pavilion (Sustainability District), World Expo, Dubai (United Arab Emirates)
28 février 2022
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Networking event – The anti-IgLON5 disease: Challenges in diagnosis, treatment and pathogenesis of the disease
Esteve Auditorium of the Esther Koplowitz Cente
24 février 2022
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EMA webinar on repurposing of authorised medicines pilot programme
Online
17 février 2022
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Information webinar on Chan Zuckerberg Initiative's Patient-Partnered RFAs with rare disease focus
Online
16 février 2022
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Euronews virtual debate on innovation in rare diseases
Online
15 février 2022
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Networking Support Scheme (NSS) event on vascular liver diseases and associated complications
Hybrid (Online and Medical University Vienna, Vienna, Austria)
3 février 2022
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European Paediatric Translational Research Infrastructure (EPTRI) webinar on medical device development
Online
20 janvier 2022
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EMA Webinar: Research in regulatory science – addressing the needs
Online
18 janvier 2022
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Information webinar on Joint Transnational Call 2022
Online
16 décembre 2021
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Anonymisation and pseudonymisation of rare disease patients: Legal and technical aspects
Online
15 décembre 2021
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Resource Webinar: INFRAFRONTIER - Bis
Online
15 décembre 2021
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EJP RD TRAINING WEBINAR: Does Randomization matter in RD clinical trials?
Online
14 décembre 2021
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XIV Foresight Training Course (FTC): “The health emergency: Regulatory crash and future perspectives”
Online
10 décembre 2021
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EJP RD and ERICA meeting on Domain specific Common Data Elements (DCDEs) Curation
Online
9 décembre 2021
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First African Summit on Rare Diseases 2021
Accra, Ghana (and Online)
1 décembre 2021
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EMA Webinar for SMEs and Academia on the Clinical Trial Regulation and the Clinical Trials Information System
Online
29 novembre 2021
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First paediatric expert patients training workshop
Online
26 novembre 2021
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Resource Webinar: Orphanet
Online
25 novembre 2021
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VASCERN webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas
Online
23 novembre 2021
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1st International Conference on Rare Diseases and Paediatric Research
Online
18 novembre 2021
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World Orphan Drug Congress 2021: Strategy, advocacy and partnering for the orphan drug industry
Sitges (Barcelona), Spain
15 novembre 2021
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Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward
Online
9 novembre 2021
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Virtual Congress: Europe Biobank Week 2021
Online
8 novembre 2021
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EATRIS Winter School 2021: Translational Medicine Explained (TMex)
Online
8 novembre 2021
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Drug repurposing for rare disease workshop series - part 3
Online
4 novembre 2021
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BioData World Congress 2021: Big Data and Digital Transformation in Pharmaceuticals and Healthcare
Basel, Switzerland
2 novembre 2021
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Drug repurposing for rare disease workshop series - part 2
Online
28 octobre 2021
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Resource Webinar: Sample Catalogue & BBMRI-ERIC Directory & Negotiator
Online
27 octobre 2021
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Quality assurance, variant interpretation and data management in the NGS diagnostics era
ONLINE
27 octobre 2021
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Ubiquitous Pharmacogenomics (U-PGx) Personalized Medicine Symposium
Leiden, the Netherlands
27 octobre 2021
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Training: Pluripotent stem cells for rare disease research: banking, data, application
Online
25 octobre 2021
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Drug repurposing for rare disease workshop series - part 1
Online
21 octobre 2021
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EURORDIS Round Table of Companies workshop: The impact of the EU regulatory network strategy 2020-2025 on the development of orphan medicines
Online
20 octobre 2021
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National Organization for Rare Disorders (NORD) Rare Breakthrough Summit 2021
Online
18 octobre 2021
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Genopole Summer School 2021: Bioinformatics and Biostatistical Tools in Medical Genomics
Campus des Berges de Seine, 1 route de Beaulieu (D39), 77240 Seine-Port
18 octobre 2021
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Better Medicines for Children Conference: Global Paediatric Drug Development Challenges & Solutions
Online
18 octobre 2021
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Resource Webinar: European Paediatric Translational Research Infrastructure (EPTRI)
Online
14 octobre 2021
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IMI impact on patient involvement event
Online
7 octobre 2021
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EFPIA Workshop: Accelerating Adoption of Complex Clinical Trials in Europe and Beyond
Online
5 octobre 2021
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Webinar on Living with SMA: Spotlight on the policy and access environment in Europe
Online
5 octobre 2021
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Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs
Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, The Netherlands
30 septembre 2021
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GATA2-related Myelodysplastic Syndromes
Hybrid
30 septembre 2021
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RWE4Decisions Webinar: Delivering a Health Data Strategy for the European Reference Networks (ERNs)
Online
29 septembre 2021
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ISPOR Webinar: Health Preference Research in the Context of Gene Therapy in Rare Diseases
Online
27 septembre 2021
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International Summer School on Rare Disease Registries and FAIRification of Data
ONLINE
27 septembre 2021
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IMPC 10th Anniversary Conference: Mouse Genetics and Genomic Medicine
Online
23 septembre 2021
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Webinar: Leaving the darkness – tackling rare bone diseases
Online
22 septembre 2021
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Resource Webinar: European Genome-Phenome Archive (EGA)
Online
20 septembre 2021
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CeBIL Annual Symposium 2021 – Orphan Drug Innovation: Needs and Priorities
Online
17 septembre 2021
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Covering Rare Diseases - National Press Foundation
Online
13 septembre 2021
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Online Training Orphanet nomenclature and Orphanet Rare Disease Ontology - ORDO for clinicians/researchers
Online
10 septembre 2021
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SCN8A & SCN2A Conference & family gathering
University of Bonn, Germany (and online livestream)
10 septembre 2021
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Advances in diagnostic and therapeutic methods for lymph flow abnormalities
Online (due to the Covid-19 situation)
9 septembre 2021
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EuropaBio Advanced Therapies webinar on EU case for equitable patient access to advanced therapies
Online
7 septembre 2021
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Online event on Adult Life & Duchenne
Online
7 septembre 2021
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Virtual Round Table: Revision of the European Orphan & Paediatric Regulation and impact for the Nordic Rare Disease Community
Online
7 septembre 2021
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Networking Support Scheme (NSS) Event: 5th European Aniridia Conference
Online
31 juillet 2021
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Resource Webinar: MetaboLights
Online
22 juillet 2021
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RDCA-DAP Webinar: How the platform can help inform optimal trial design in progressive rare disease
Online
21 juillet 2021
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Alignment of national rare diseases strategies with the European Joint Programme on Rare Diseases
ONLINE
8 juillet 2021
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U.N. Political Forum 2021 High-Level Side Event: Addressing the challenges of persons living with a rare disease
Online
7 juillet 2021
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EJP RD Advisory Committee for Therapeutics (ACT) workshop (ERN-focused event)
Online
7 juillet 2021
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ERN-Skin rare skin disease webinar: Combined cell and gene therapy for Epidermolysis Bullosa
Online
6 juillet 2021
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Webinar: Digitalization of the inborn errors of metabolism pathways from Blau et al.
Online
1 juillet 2021
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ERN-Skin rare skin disease webinar: Genetic discoveries in ichthyosis
Online
29 juin 2021
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Scientific CDG Symposium 2021 (Virtual)
Online
23 juin 2021
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European Research and Innovation Days 2021
Online
23 juin 2021
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Resource Webinar: hPSCreg
Online
21 juin 2021
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RDCA-DAP Webinar: Value of Integrated Data and Analytics in Rare Disease Drug Development
Online
16 juin 2021
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Understanding variability in rare disease populations
Online
16 juin 2021
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PedCRIN Final Event: Fostering International Paediatric Clinical Research
Online
16 juin 2021
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Findacure’s Drug Repurposing for Rare Diseases Conference 2021
Online
15 juin 2021
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EOSC Symposium 2021: Implementing an inclusive European Open Science Cloud
Online
15 juin 2021
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Orphan Drug Expert Group Webinar: Addressing the unmet needs of rare disease patients
Online
11 juin 2021
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Share4Rare webinar: Setting the Path for Next Generation Data Sharing
Online
8 juin 2021
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ProDGNE Kick-Off Webinar
Online
3 juin 2021
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NIH Virtual Roundtable on Gene-Targeted Therapies: Early Diagnosis and Equitable Delivery
Online
3 juin 2021
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World Duchenne Organization announces Duchenne Care Conference 2021
Online
1 juin 2021
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Tech4Growth Health Workshop series: Building Impactful Partnerships Between Start-ups – Corporates – Academia
Online
31 mai 2021
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Resource Webinar: DECIPHER
Online
27 mai 2021
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European Conference on the Diffusion of Genomic Medicine: Health Economics & Policy
Online
26 mai 2021
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FAIRplus Project Webinar: Discovering the FAIR Cookbook
Online
26 mai 2021
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16th International Congress on Neuromuscular Diseases
Online
21 mai 2021
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Interpretation of novel biomarkers in related diseases through data interoperability in a pan-rare disease database
Online
19 mai 2021
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Curating the Clinical Genome Virtual Conference
Online
12 mai 2021
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Action for Rare Disease Empowerment (ARDEnt) Webinar on "Making the Unseen Seen" Report
Online
11 mai 2021
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GBT Webinar on Inequalities in Healthcare – Spotlight on Sick Cell Disease Patients in Europe
Online
11 mai 2021
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EuropaBio Advanced Therapies webinar on value of advanced therapies
Online
11 mai 2021
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Rare Disease Biobanks: Roles in Research Networks and International Collaborations
Online
10 mai 2021
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RARE Conversations Webinar on Research In Rare Diseases: Specificities And Needs
Online
5 mai 2021
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EJP RD Technical Hands-on Workshops: GA4GH Phenopackets
Online
30 avril 2021
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Share4Rare webinar for neuromuscular diseases (NMD) patients and caregivers
Online
27 avril 2021
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Resource Webinar: Cellosaurus
Online
26 avril 2021
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RDCA-DAP: Searching, visualizing and exploring data in the RDCA-DAP platform to identify data of interest for advanced analysis
Online
21 avril 2021
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Training on Strategies to foster solutions of undiagnosed rare disease cases
Online
12 avril 2021
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Supporting the innovation and exploitation activities of transnational research projects on rare diseases - an EJP RD and EC Webinar
25 mars 2021
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Resource Webinar: INFRAFRONTIER
Online
24 mars 2021
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10th International Meeting on Neuroacanthocytosis Syndromes - Networking event
Online
10 mars 2021
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1st International Conference on Rare Diseases “Building a Pathway from Diagnosis to Access''
Online
1 mars 2021
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Rare Disease Day Video
Online
28 février 2021
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Heritable Human Genome Editing Rare Disease Week Discussion
26 février 2021
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RE(ACT) Congress & IRDiRC Conference 2021
Online
13 janvier 2021
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EJP RD Policy Meeting
Online
12 janvier 2021
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