(All events are indicated in CET time)

21

Apr

2021

RDCA-DAP: Searching, visualizing and exploring data in the RDCA-DAP platform to identify data of interest for advanced analysis

Register here Example Disease: Friedreich’s ataxia Presenters: Amanda Borens, MSc, Executive Director, Data Science, DCC; Vicki Theurer Crider, Sr. Project Manager, DCC;…

  • 17:00 - 18:00
  • 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

27

Apr

2021

Share4Rare webinar for neuromuscular diseases (NMD) patients and caregivers

Share4Rare, in collaboration with the World Duchenne Organization and the John Walton Muscular Dystrophy Research Centre, is hosting…

  • 13:00 - 14:00
  • 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

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

12

May

2021

Curating the Clinical Genome Virtual Conference

Pr. Gert Matthijs, partner of EJP RD, is part of the Scientific Programme Committee of this year’s Curating…

  • 11:00 - 18:00 (14 May 2021)
  • Online

19

May

2021

Interpretation of novel biomarkers in related diseases through data interoperability in a pan-rare disease database

REGISTER HERE Example Diseases: Polycystic kidney disease and kidney transplant Presenters: Jagdeep Podichetty, PhD, Director, Predictive Analytics; Klaus Romero,…

  • 17:00 - 18:00
  • Online

26

May

2021

European Conference on the Diffusion of Genomic Medicine: Health Economics & Policy

As part of Solve-RD, Solving the unsolved rare diseases, a European project H2020 on genetic research, the Health Economics Team…

  • 15:30 - 19:45 (28 May 2021)
  • 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

16

Jun

2021

Understanding variability in rare disease populations

REGISTER HERE Case Study: Modeling disease progression in polycystic kidney disease to inform trial design Presenters: Rhoda Muse, PhD, Scientist 1,…

  • 17:00 - 18:00
  • 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

23

Jun

2021

Scientific CDG Symposium 2021 (Virtual)

Registration are open until 30 April 2021 (deadline for Early Bird registration) Abstract Submission are open until 31…

  • 11:00 - 18:30 (24 June 2021)
  • 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 of adopting…

  • 14:00 - 15:00 (8 July 2021)
  • Online

22

Jul

2021

Resource Webinar: Metabolights

Speaker: TBD   Date: 22nd July  Registration link to receive connection details Platform Summary: MetaboLights is a database for Metabolomics experiments and derived information. The…

  • 15:00 - 16:00
  • 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

27

Sep

2021

Training on rare disease registries and FAIRification of data at the source

Information will be provided soon

  • 09:00 - 17:00 (1 October 2021)
  • Information will be provided soon

27

Oct

2021

Quality assurance, variant interpretation and data management in the NGS diagnostics era

Information will be provided soon

  • 09:00 - 17:00 (29 October 2021)
  • Information will be provided soon

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

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