November 18-19, 2025, at the UMF "Carol Davila" in Bucharest, the rare diseases community takes an important step forward: The EUROPLAN 2025 Conference marks the official launch of the Coalition for the update and implementation of the National Plan for Rare Diseases (PNBR). It is a key moment for the voices of patients, health professionals and decision-makers to come together in one place, with the same goal: real, equitable and predictable access to diagnosis and treatment for people affected by rare diseases in Romania.
The Institute for Research-Development in Genomics (ICDG), the University of Medicine and Pharmacy "Carol Davila" and ARPIM are partners in this initiative coordinated by the National Alliance for Rare Diseases Romania, which aims to monitor the implementation of the PNBR and to accelerate the integration of European Reference Networks (ERN) in the national health system, including through the JARDIN project. The correct implementation of the PNBR and ERN is not only a strategic obligation, but a matter of fundamental rights for rare disease patients.
Prof. Dr. Maria Puiu, one of the main voices of the rare disease community in Romania, and Adrian Nicolae Buzatu, Deputy Director General of the CGDI, represent the CGDI in the sessions dedicated to PNBR, genomic medicine and integration of care pathways for rare disease patients. Their contribution aims at bridging the gap between public policies, infrastructure and the concrete needs of patients, so that plans turn into real, functioning services in hospitals and centers of expertise.
The event is realized with the support of ARPIM, UCB, AstraZeneca, MSD, GENESIS Pharma, Takeda, Medison, Terapia, Chiesi, IPSEN, Novartis, Servier, Roche, Johnson & Johnson, Boehringer Ingelheim, Pfizer and Sanofi - partners that support the long-term development of public policies and services for people affected by rare diseases.
Together, we can turn the National Plan for Rare Diseases into a living and applied tool to make a difference in the lives of patients and their families.
#EUROPLAN2025 #RAREBULLE #PNBR #GARDEN #ICDG #UMFCD #ANBRaRo #PatientPartnership
