Many actors in the field of rare diseases point to the role played by the notion of ‘rareness’ in the emergence and development of what we refer to as the ‘hybrid collective model’ (HCM) of collaboration between patients and experts. The HCM features two main characteristics: (i) the constitution of communities which bring togetherfamilies and researchers as actors in the ‘war on disease’; and (ii) organized cooperation between experts and patients’ organizations in the production of knowledge on diseases. This article seeks to highlight the reflexive work carried out by French and Portuguese patients’ organizations on the notion of rareness and its relation with the HCM. A systematic surveyand fieldwork conducted in both countries have shown that such relation is neither systematic nor univocal. Some patients’ organizations point to the limits or the lack of relevance of rareness as a category for grounding their action. These criticisms have led us to envisage a more general dynamic: the choice of the HCM as a mode of involvement in a politics of singularization-generalization of causes and conditions. We suggest some possible consequences of this singularization-generalization dynamic in the conclusion.

Comment rendre compte de la dynamique informationnelle, cognitive, politique à l’œuvre dans ces groupes? Comment rendre compte, en amont de cela, de la composition – au sens d’un processus actif et constamment réactivé – du groupe lui-même? Dans la première temps, l’analyse présentée s’attache à décrire un panorama des méthodes qui ont été développées par les chercheurs en sociologie ou en communication pour analyser les groupes électroniques de discussion en essayant de voir quelles réponses ils ont tenté d’apporter à ces défis: les méthodes en question se divisent en deux grandes catégories, celles qui s’intéressent au contenu de ce qui s’échange et celles qui s’intéressent au réseau de relations qui résulte des échanges; rares sont les travaux qui à défaut d’articuler complètement ces deux types d’approches les mobilisent au moins de manière conjointe. En d’autres termes, le social et le sémantique sont encore à réconcilier dans les études sur les groupes de discussion. Dans la seconde partie, l’auteur propose un certain nombre d’outils afin de dépasser les limites obervées et les met à l’œuvre sur l’analyse de groupes de discussion dans le domaine de la santé.

Attention Deficit Hyperactivity Disorder (ADHD) is an unsettled condition whose history is characterised by controversy amongst medical professionals. Its emergence has frequently been interpreted as an example of the growing ‘medicalisation’ of society and the individualisation of social issues. This paper examines how groups representing children with ADHD in France and Ireland engage within this contested medical domain, and challenges the frequently made association between the process of ‘medicalisation’ and ‘de-politicisation’. We argue that through the weighing up of different bodies of knowledge, parents’ groups redefine issues of significance requiring action at both an individual and a collective level. Parents’ organisations have developed different politics of knowledge around ADHD, which become visible in their ‘epistemic efforts’. In Ireland, organisations remain committed to a biomedical approach to ADHD, although their practical efforts are oriented towards complementing medication with non-pharmaceutical treatments. In France, the key parents’ group opposes any paradigm that focuses exclusively on one aspect of the disorder: social, psychological or neurological. It struggles to ‘open up’ the scientific domain of ADHD. We demonstrate how these contrasting engagements with knowledge lead parents’ organisations to politicise and act on the area of ADHD in different ways within their respective countries.

The literature on childbirth organisations focuses on their critical positioning towards medical definitions/practices of birth, their efforts to promote ‘natural’/’normal’ birth, their espousal of a rhetoric of choice and their relationships to feminist activism. However it says little about the practices through which these organisations seek to achieve their aims. Based upon a comparative study in the UK, Ireland, Portugal and France, we show that in all four organisations, knowledge related activities are central to their activism. Four configurations can be distinguished based on the nature of the evidence underpinning the activism: Irish activism drew extensively on surveys on women’s experiences; UK activism focused on the collection of statistical evidence on medical practices; scientific evidence was put centre stage by the French childbirth organization whereas the youngPortuguese movement harnessed international authoritative evidence to support its change agenda. Through these activities, the organizations contributed to the production of knowledge, established or expanded discursive spaces and identified new fields of actions. The connections between evidence based activism and the re-shaping of organisational objectives and agendas are made visible as well as the constitutive role of these organisations in naming and framing issues relating to childbirth as distinctfrom merely opposing medicalization.