Why come together in an association ? Four motives for forming or joining rare disease associations
The particular nature of associations is that people come together willingly and form a group to achieve shared purposes or goals. In this connection, the determinants and mechanisms involved in the shift from individual to collective constitute a crucial question that has been quite neglected until now. This study applies a theoretical approach to associating as an act based on the notion of good, an approach commonly used in institutional economics. The guiding hypothesis is that people join an association to obtain a good they could not obtain elsewhere, a good whose nature affects the status those persons confer on the group. This hypothesis is tested by way of the empirical case of rare disease associations, wherein a low number of scattered, randomly selected individuals come together in a group around extremely heterogeneous objectives. The study brings to light four motives for associating and four types of associative group, which correspond to the following four types of goods : being a consumer, being efficient, being active and being together.