The European Joint Program on Rare Diseases (EJP RD) was pleased to announce its second General Assembly (GA) and Consortium Meeting, which took place from 14 to 18 September 2020 online, due to the COVID-19 crisis at the time.
The EJP RD brought together over 130 institutions (including all 24 ERNs) from 35 countries: 26 EU Member States, 7 associated countries, the UK, and Canada.
The aim was to create a comprehensive, sustainable ecosystem that allowed a virtuous circle between research, care, and medical innovation on rare diseases (RD) by improving integration and implementing efficient financial models to support it.
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus was a full partner of the EJP RD project, and thus all researchers and stakeholders belonging to it were able to benefit from the proposed program and participate in the meeting.
The 2020 GA program was very rich and tailored to the specific interests of the RD community.
Participants attended several workshops focused on:
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improving understanding of EJP RD funding mechanisms to increase the quality of their applications,
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strengthening capacity building to advance new findings toward clinical settings,
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training in the use of systems to diagnose difficult RD cases with exome/genome data,
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introducing novel and innovative methodologies applied to RD clinical trials,
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explaining EJP RD considerations on interoperability to make registries interoperable and FAIR.
Additionally, interactive sessions were held to facilitate the acquisition of practical skills, such as:
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guidance diagrams on GDPR research data, ethical use, and legal interpretation of medical research,
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access to relevant resources for research needs on the EJP RD Virtual Platform (VP).
Special attention was given to “education” on RD research through two interactive sessions on:
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how to fill the gaps and implement programs for researchers and young clinicians,
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developing the RD e-learning scheme to align all actions.
Plenary and parallel Pillar sessions provided input that was used to finalize the EJP RD roadmap for 2021.
The full PROGRAM OF THE MEETING was made available (and regularly updated with more details on the session content).
Members of all EJP RD participating institutions were invited to register to take part in the GA meeting and receive all necessary information to join 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.