Celebrating Progress in Rare Disease Research
On October 30, 2025, the European Rare Diseases Research Alliance (ERDERA) will celebrate its first anniversary with an online event open to the entire rare disease community. The event will take place from 09:00 to 11:20 CET and will offer a unique opportunity to hear from experts in neurology, neurometabolic diseases, and patient advocacy, who will share the latest scientific insights and their real-world experiences. During the event, participants will learn firsthand how the partnership is transforming the future of rare disease research through bold, data-driven, collaborative innovation. For more information and for the agenda, you can visit ERDERA’s dedicated webpage for the online event at the following LINK. The session is free to attend, but registration is required. You can register to attend the open session HERE. TEDDY will be closely following the event as part of its ongoing commitment to the rare disease community.
TEDDY’s contribution to the ERDERA project
Within the ERDERA project, TEDDY, in collaboration with Rare Diseases Greece and with the support of KRIKOS ZOIS, organized the ERDERA Young Patients Training on May 2nd and 3rd in Athens. The Young Patient Training is provided under Work Package 20 – Subtask 20.1.2, coordinated by TEDDY and partners c4c-S, IMAGINE, and EURORDIS, with the aim of equipping young people with the knowledge and skills to understand and actively contribute to research on paediatric rare diseases.
Through an interactive and inclusive approach, TEDDY fostered dialogue among young participants, researchers, and healthcare professionals, promoting awareness of patients’ rights and highlighting the importance of involving young people in clinical research. For more information about ERDERA Young Patients Training you can read TEDDY News at the following LINK. For all the details of ERDERA Young Patients Training, including the event agenda, speakers’ list, and training sessions: LINK.