This training has been developed in response to the growing need for advocates to understand and navigate the complexities of data management, ethical considerations, and the role of AI in rare disease research across Europe. Its primary objective is to equip participants with the knowledge and skills to effectively engage with and influence data-driven research initiatives in the rare disease community.
ORGANIZED BY:
Open Academy x ERDERA Schools are organized by EURORDIS-Rare Diseases Europe, World Duchenne Organization and the Duchenne Data Foundation, and co-funded by EURORDIS-Rare Diseases Europe and ERDERA.
DESCRIPTION:
Hybrid training programme for 20 participants (rare disease patient advocates in Europe and PhD/up to two years post‑PhD researchers). Applications open in January. Online learning runs from March to June, followed by two days of in‑person sessions in September in Barcelona. This training focuses on data management, ethical/regulatory considerations, data protection (including GDPR), and use of AI in rare disease research, with an emphasis on enabling advocates to engage as equal partners.
More information on this training here.