EJP RD General Assembly Meeting

The European Joint Program on Rare Diseases (EJP RD) is glad to announce its second General Assembly (GA) and Consortium Meeting that will take place from 14 to 18 September 2020 online, due to the current COVID-19 crisis.

The EJP RD brings over 130 institutions (including all 24 ERNs) from 35 countries: 26 EU Member States, 7 associated, UK & Canada.

The aim is to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation on rare diseases (RD) research by improving its integration and implementing efficient financial models to support it.

The Slovak Academy of Sciences is a full partner of EJP RD project and thus ALL researchers and stakeholders belonging to it can profit from the proposed program and join the meeting with the exception of Day 1 closed sessions, which are dedicated to EJP RD management.

This year the GA program is going to be very rich and tailored to the specific interests of RD community.

The participants will be joining several workshops focused on:

• improving the understanding of ongoing EJP RD funding mechanisms to increase quality of their applications
• strengthening the capacity building to develop their new findings towards clinical settings
• training them in the use of systems to diagnose difficult RD cases with exome/genome data
• introducing novel and innovative methodologies applied to RD clinical trials
• explaining EJP RD considerations on interoperability to make registry interoperable and FAIR 

In addition, interactive sessions will take place to facilitate the acquisitions of practical skills, such as 1) guidance diagrams on GDPR research data, ethical use and legal interpretation of medical research; 2) access to relevant resources for research needs on the EJP RD Virtual Platform (VP).

Special attention will be dedicated to “education” on RD research with two interactive sessions on 1) how to fill the gaps and implement programs for researchers and young clinicians; 2) developing the RD e-learning scheme to align all actions.

Plenary and parallel Pillar sessions will provide inputs that would be used to finalize the EJP RD roadmap for 2021.

Please, have a look to the preliminary program of the meeting in the attachment below or via MsTeams (the program will be regularly updated with more details on the content of each sessions, so do not hesitate to visit it regularly).

Members of all EJP RD participating institutions are invited to register here to take part at the EJP RD GA meeting and receive all necessary information to connect to the sessions.

Recorded webinar(s) will be freely available on the EJP RD website and on its official YouTube channel after the meeting to share good practices, relevant contents, and important support materials with the whole RD community.

Tune with us on twitter at the @EJPRareDiseases account and look at the EJP RD website to get the latest news from the EJP RD community.

Feel free to contact us at the gameeting2020@ejprd-project.eu  if you have any questions.