Past EJP RD Events

Past EJP RD Events

16

Dec

2021

Information 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

Dec

2021

Resource 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

Dec

2021

Anonymisation 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

Dec

2021

EJP RD TRAINING WEBINAR: Does Randomization matter in RD clinical trials?

General information Rare Diseases (RD) is an area where national and international multidisciplinary collaborations are valuable to overcome…

  • 16:00 - 18:30
  • Online

09

Dec

2021

EJP 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

2021

First 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

2021

Resource 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

2021

1st 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 November 2021)
  • Online

09

Nov

2021

Rare 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

2021

Drug 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

2021

Drug 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

2021

Resource 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

2021

Quality 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 October 2021)
  • ONLINE

25

Oct

2021

Training: 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 October 2021)
  • Online

21

Oct

2021

Drug 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

2021

Resource 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

2021

Clinical 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 October 2021)
  • Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, The Netherlands

30

Sep

2021

GATA2-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 October 2021)
  • Hybrid

27

Sep

2021

International 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 October 2021)
  • ONLINE

20

Sep

2021

Resource 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

2021

Online 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

2021

SCN8A & 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 September 2021)
  • University of Bonn, Germany (and online livestream)

09

Sep

2021

Advances 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 September 2021)
  • Online (due to the Covid-19 situation)

31

Jul

2021

Networking 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 August 2021)
  • Online

22

Jul

2021

Resource 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

Jul

2021

Alignment 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

Jul

2021

EJP 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 July 2021)
  • Online

01

Jul

2021

Webinar: 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

Jun

2021

Resource 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

May

2021

Resource 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

May

2021

Rare 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 May 2021)
  • Online

30

Apr

2021

EJP 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

Apr

2021

Resource 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

Apr

2021

Training 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 April 2021)
  • Online

25

Mar

2021

Supporting 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

2021

Resource 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

Feb

2021

Rare 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

2021

RE(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 January 2021)
  • Online