Rare disease research coordination

Most active in this area

• FONDAZIONE TELETHON ETS

  Italian research foundation developing gene therapies for rare genetic diseases, specializing in lysosomal biology, AAV vectors, and inherited retinal disorders.

  “EJP RD, LYSOCIL, and BATCure position Telethon within European rare disease networks for data sharing, FAIR principles, and patient empowerment.”

  IT22 projects
• EATRIS ERIC

  European infrastructure consortium accelerating translational medicine through shared facilities, FAIR data services, and biomarker validation across 30+ countries.

  “Contributed to EJP RD (EUR 940K, their second-largest grant) and ERICA, both focused on coordinating rare disease research across Europe.”

  NL20 projects
• DEUTSCHE FORSCHUNGSGEMEINSCHAFT EV

  Germany's central research funding agency, coordinating transnational ERA-NET programs in biodiversity, quantum technologies, rare diseases, and social sciences.

  “E-Rare-3 implemented IRDiRC objectives and EJP RD built a European Joint Programme on rare diseases with FAIR data principles.”

  DE12 projects
• FONDS DE RECHERCHE DU QUEBEC - SANTE

  Quebec's health research funding agency, co-financing European ERA-NETs in neuroscience, rare diseases, nanomedicine, and personalised medicine.

  “Participated in E-Rare-3 (ERA-NET for rare diseases) and the European Joint Programme on Rare Diseases (EJP RD), covering data sharing, FAIR principles, and patient empowerment.”

  PrimaryCA6 projects
• HOPITAUX UNIVERSITAIRES DE STRASBOURG

  French university hospital contributing clinical trial sites, patient cohorts, and immunological expertise in rare diseases, autoimmune disorders, and transplantation.

  “Participated in both EJP RD (European Joint Programme on Rare Diseases) and ERICA (rare disease research coordination action), contributing clinical data and patient access.”

  PrimaryFR4 projects