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 FOR A RESERVE LIST An e-mail will be sent by 15 March 2021 to the selected participants. Respondents…

  • 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 will take place on Thursday, 25 March, 10h00 – 11h15 via Microsoft Teams. Title: ‘Supporting the innovation…

  • 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 Research Infrastructure for the generation, phenotyping, archiving and distribution of model mammalian genomes. The core services of…

  • 15:00 - 16:00
  • Online

10

Mar

2021

10th International Meeting on Neuroacanthocytosis Syndromes - Networking event

March 10-12, 2021- online event Neuroacanthocytosis syndromes (NA) are a group of rare, but devastating, neurodegenerative disorders, with Chorea Acanthocytosis as the “core” disease of this family. To date there are no treatments that can…

  • 15:00 - 21:15 (12 March 2021)
  • Online

01

Mar

2021

1st International Conference on Rare Diseases “Building a Pathway from Diagnosis to Access''

1- 2 March 2021 ONLINE The 1st International Conference on Rare Diseases “Building a Pathway from Diagnosis to Access” recognises that the next decade holds great potential for improvement and that while we cannot predict…

  • 09:00 - 17:00 (2 March 2021)
  • 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 be held worldwide. EJP RD will contribute to Rare Disease Day. Stay tuned to see this year’s…

  • 10:00 - 18:00
  • Online

26

Feb

2021

Heritable Human Genome Editing Rare Disease Week Discussion

Heritable human genome editing has been proposed as a means of helping parents avoid passing genetic diseases to future generations. But can heritable human genome editing be used safely? On February 26, 2021 at 9:00…

  • 15:00 - 16:30

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 place on 13-15 January 2021. It aims to bring together scientific leaders, patients, and policy makers to advance…

  • 09:00 - 17:00 (15 January 2021)
  • Online

12

Jan

2021

EJP RD Policy Meeting

On the 12th and 13th of January, The European Joint Programme on Rare Diseases (EJP RD) held its first Policy Meeting engaging EJP RD partners and numerous external stakeholders. The meeting was an occasion to…

  • 13:00 - 12:00 (11 January 2021)
  • Online