Cooperation in the Field of Rare Diseases: A Social Science Perspective

As unanimously claimed within the rare disease community, cooperation between all stakeholders is a necessity in order to tackle these diseases and improve the difficult situations faced by patients and families. Public authorities, health professionals, scientists, industrials, or obviously patients and relatives' associations, have an active part to play in the collective projects that are currently being developed worldwide. However, putting cooperation into practice does not always go unhindered. Drawing on a qualitative research in social sciences, this poster presented some drivers and effects of cooperation in the field of rare diseases in Belgium and, more generally, in Europe. It highlighted some meaningful points of agreement and tension such as the degree of adequacy between international guidelines and national constraints, the confrontation between professional and experiential points of view, or the multiple meanings and uses of the "rare diseases" category. To conclude, the poster stated the value of multidisciplinary perspectives and mutual exchanges between social scientists and stakeholders, for the joint understanding of, and cooperation in, the lively field of rare diseases.