Nearly 600 people followed ERDERA opening ceremony, an event that marked the start of a new era in rare disease research, either online or in person in central Paris on 28 October 2024.
The highlights of the speeches made at the event can be summarized as follows:
The critical role of ERDERA in structuring the ecosystem to benefit patients
The importance of capacity building for creating sustainable networks that can handle technological challenges effectively while participating in new scientific developments
The role of industry in this new partnership to help translate early-stages research to solutions that can reach the patients
Patient driven approach embedded in every aspect of ERDERA, from setting research policy to actively involving patients’ organisation
National Mirror Groups (NMGs) and their critical role in engaging national stakeholders and aligning country specific actions with European initiatives
Challenges, de-risking mechanisms, and innovative funding models as well as the role of patients
Daria Julkowska, ERDERA coordinator, INSERM (France), closed the event with an overview of the new partnership vision, mission and activities.
For more information about the event, please click here.