00:00The research on rare diseases has never stopped in recent years.
00:11Various aspects of the research have been deepened in this area,
00:17not only the basic research for the definition of the pathogenic mechanisms of rare diseases
00:25but also the research on the organization of health systems,
00:30on the care of people with rare diseases,
00:33especially those who have more difficulty accessing the health system
00:42and who are therefore more disadvantaged.
00:45All this research is carried out in a multistakeholder environment
00:51with the involvement of all the actors involved,
00:54first of all the patients who are then destined for the outcomes of the research.
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