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Joint European Programme for Rare Diseases Webinar

The Joint European Programme for Rare Diseases (EJP RD) is holding a webinar "Meet the European Programme for Rare Diseases" on December 15th. Participation is free of charge but registration is required.

The program brings together more than 135 organizations from 35 countries, with the aim of creating a sustainable ecosystem and enabling a virtuous circle between research, health care and medical innovation. Portugal is represented by the Ministry of Science, Technology and Higher Education, through FCT, and by the Ministry of Health, through the National Institute of Health Dr. Ricardo Jorge (INSA).

The need for greater national coordination and alignment with this program led to the creation, in 2020, of the Portuguese National Mirror Group (NMG-P) of the EJP RD, which is coordinated by INSA in collaboration with the FCT and the Directorate General of Health (DGS), also integrating the National Commission for Reference Centers (CNCR), the Union of Portuguese Rare Disease Associations (RD-Portugal), Orphanet Portugal and the Agency for Clinical Research and Biomedical Innovation (AICIB).

One of the tasks of the NMG-P group is to disseminate the EJP RD and the opportunities and tools that are of interest to the national rare disease community (funding, training, mentoring, platforms and others), in order to increase the participation and empowerment of researchers, clinicians, patient organizations and national companies in this area.

Program and registration here.