ELIXIR Rare Disease Community F2F/hybrid meeting 2025
Via Zamboni, 22 40126BO Italy
The ELIXIR Rare Disease Community meeting will take place from 13:00 CEST on Thursday 15 May to 14:00 on Friday 16 May, with an optional community dinner planned for the evening of 15 May. This will be a hybrid meeting, with the in-person component hosted in Bologna, Italy.
Community members will give five-minute presentations on their background and work, engage in round-table discussions and there will be a dedicated time to discuss future work and collaborations. This event will bring together members of the ELIXIR Rare Disease Community to share ideas, update on relevant projects happening across Europe and provide professional networking time around RD-related special topics.
Participation and funding
The in-person component will have a limited number of attendees, while the virtual component has no attendance limit.
Selected invited participants will be eligible for travel funding. Details about funding and reimbursement will be provided after successful registration. Please do not book any travel arrangements until you receive confirmation of your acceptance for in-person attendance.
Travel and venue information
When you have received confirmation of your in-person attendance, you will need to arrange your own travel and accommodation. Reimbursement details will be shared with invited participants after successful registration.
Session 1: The ELIXIR Rare Disease Community: presentation and objectives of the meeting
10 min Welcome - Emidio Capriotti and Claudio Carta
5 min Meeting guidelines and Code of Conduct - Magda Chegkazi
20 min (15+5) The ELIXIR Rare Disease Community: past, present and future - Sergi Beltran and Emidio Capriotti
10 min ELIXIR RD Community Training - Brane Leskosek and Marko Vidak (online)
30 min (5 min presentations by participants) - Eleni Mina, Friederike Ehrhart, Giulia Babbi, Anais Mottaz, Tine Tesovnik, Luana Licata
15 min Open Discussion
15:30 - 16:00
Coffee Break
16:00 - 18:00
Session 2: Round table discussion with Invited speakers
10 min (8+2) Helios Cost Action and HemaFAIR - Francesco Cremonesi (online)
10 min (8+2) Overview of GDI; Alignment between ELIXIR RD and 1+MG RD use cases - Melissa Konopko (online)
35 min (5 min presentations by participants) - Monica Chagoyen (online), Federica Isidori, Riccardo Percudani, Sergi Beltran, Antonio Rausell, Michael Baudis, Andrew Stubbs
20 min (15+5) ELIXIR Community: hCNV - Michael Baudis, Antonio Rausell, Krzysztof Poterlowicz and Andrew Stubbs
15 min (12+3) ERDERA: general presentation and the Data Services Hub - Marc Hanauer
5 min ERDERA Joint Transnational Calls - Baptiste Eluard (online)
10 min (8+2) JARDIN - Luca Sangiorgi
15 min Open Discussion
20:00
Social Dinner
Day 2 May 16th, 2025 (Time in CEST)
9:15 - 11:00
Session 3: New activities and partnerships with other initiatives
10 min (8+2) Genomed4All - Federico Alvarez (online)
30 min ELIXIR Communities, platforms and HDTR portfolio; strategic partnership with GA4GH - Magda Chegkazi
10 min (8+2) ELIXIR Community: Federated Human Data and FEGA - Jordi Rambla (online)
10 min (8+2) ELIXIR Community: Research Data Management - Mijke Jetten (online)
