Latest News News Guidelines 02/2026 on Anonymisation | European Data Protection BoardAugust 10, 2026ICH E6(R3): Good Clinical Practice Annex 2 Adopted and PublishedAugust 6, 2026Carta di Roma: Italy’s rare disease summit sets the agenda for EU PolicyJuly 22, 2026New discussion paper on AI and evidence-informed policy-makingJuly 16, 2026New ERDERA Ethics & Regulatory webinar seriesJuly 13, 2026Doping and addiction: knowledge as the first step to preventionJune 26, 202619 June 2026: World Sickle Cell Disease DayJune 18, 2026Feedback period on the Biotech Act is now openJune 11, 2026READ MOREUpdates from projects Fondazione Gianni Benzi at the ERDERA General Assembly 2025November 6, 2025Fondazione Benzi at the World Orphan Drug Congress Europe 2025November 5, 2025FGB participation in the FAIR Training School 2025September 29, 2025Promoting gender equality in research: FGB at COST ConnectMay 26, 2025FAIR Principles Training SchoolMay 19, 2025ERDERA training for young advocates for rare diseasesMay 6, 2025FGB at c4c Final Project Meeting: advancing paediatric researchApril 16, 2025ERAMET’s first year milestone meetingApril 10, 2025READ MORENew publications New publication from the OrphaDev4Kids projectMay 25, 2026Ethics and regulatory guidance to address the challenges encountered in research on rare diseases: the experience of EJP RD May 18, 2026Sickle cell disease in Nigeria: ARISE study on infections in paediatric patientsApril 28, 2026New publication in Frontiers in Medicine: repurposing for small population needsApril 13, 2026New ARISE publication highlights key priorities for Sickle Cell Disease Care in NigeriaMarch 27, 2026Mapping expertise and educational needs in haemoglobinopathies: results from the HELIOS COST Action surveyJanuary 14, 2026HELIOS Action: a new scientific article published in HemaSphereDecember 12, 2025Advances in safer treatments for vulnerable patients: new publicationsNovember 19, 2025READ MOREUpdates on the new EU pharmaceutical legislation Feedback period on the Biotech Act is now openJune 11, 2026Published the texts of the Regulation and the Directive as deriving from the trilogues negotiationsMarch 23, 2026Updates on the new EU pharmaceutical legislationFebruary 6, 2026READ MORE
