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In this article, we examine how European patients' organizations (EPOs) contribute to moving patient advocacy beyond national level organizing and acting. In contrast to Europeanization studies, our contention is that EPOs are not content merely to bring national claims up to the European level nor simply enrich national debates with European issues. Rather, we argue that EPOs engage in a compounded multilevel construction of patients as ‘European individuals’ and of their conditions as matters of concern for Europe. Based on an analysis of the projects, pronouncements, and politics of three EPOs – European Organization on Rare Diseases, Alzheimer Europe, and Attention Deficit Hyperactivity Disorder Europe – we explore how they form European communities of patients and give shape to health issues they deem important to address at European level. We show that EPOs' involvement in the ongoing construction of Europe relies on their capacities to collect, format, and circulate comparative facts, figur...

International audience; This article investigates how the engagement of patients' organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a 'politics of numbers' for stating the fact of rare diseases as a major public health problem, and promoted patients' critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a 'politics of singularisation'. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this 'politics of singularisation' not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.

International audience; This article discusses the notion of emergent concerned groups and explores how these groups contribute to shaping the relations between technoscience, politics, and economic markets. The first part presents the case of the French Association of patients suffering from muscular dystrophies. This history suggests that under certain conditions, emergent concerned groups are able to impose a new form of articulation between scientific research and political identities by directly linking the issues of research content and results to that of their place in the collective. The second part argues that the evolution of economic markets, combined with that of science and technology, leads to a multiplication of those emergent concerned groups. The study of the conditions under which these emergent groups become legitimate stakeholders as well as the analysis of their impact on market organization and technoscientific institutions are key research topics for the near future.

Patient organisations' identity claims and their relations with specialists. The case of the French Muscular Dystrophy Organisation. Philanthropic organisations are historical key players into medical research. Those last decades, they have been joined by patient organisations. In France, the French Muscular Dystrophy Organisation (AFM) illustrates this evolution. The AFM supports sicentific and clinical research on neuromuscular diseases, and more broadly, on genetic diseases. In addition, MD patients and families participate actively into the production of knowledge and the implementation of new forms of care. Thus, it is worth explicitating the mode of action of the AFM, for it will help understand how do users come to intervene into activities that are supposed to be the exclusive domain of specialists. The aim of this article is to describe the main features of the mode of action of the AFM. It draws on a research project whose objective is to trace the history of the AFM, and its long-lasting implication into the scientific, medical, economic, social, and political domains. This article is divided into two sections. The first section will answer the following question: in what extent is the model invented by the AFM an original one? It will be shown that the AFM, as many patient organisations, inherits the problem of the relationships between users and specialists from the self-help movement. It will be argued that none of the solutions imagined by the self-help movement fits to the situation of the AFM. Therefore, the AFM had been forced to elaborate its own model. The second section displays the main characteristics of the AFM model: a) the board of administrators has the political power to decide upon research support and orientation; the scientific council has a strict advisory role; b) patients and families contribute to the production of knowledge on their diseases, and to the implementation of new forms of care. In the conclusion, the consequences of this model will be discussed, notably as regards the way the mobilisation against diseases is organised.

International audience; This article proposes the notion of 'evidence-based activism' to capture patients' and health activists' groups' focus on knowledge production and knowledge mobilisation in the governance of health issues. It introduces empirical data and analysis on groups active in four countries (France, Ireland, Portugal and the United Kingdom), and in four condition-areas (rare diseases, Alzheimer's disease, ADHD - Attention Deficit Hyperactivity Disorder and childbirth). It shows how these groups engage with, and articulate a variety of credentialed knowledge and 'experiential knowledge' with a view to explore concerned people's situations, to make themselves part and parcel of the networks of expertise on their conditions in their national contexts, and to elaborate evidence on the issues they deem important to address both at an individual and at a collective level. This article argues that in contrast to health movements which contest institutions from the outside, patients' and activists' groups which embrace 'evidence-based activism' work 'from within' to imagine new epistemic and political appraisal of their causes and conditions. 'Evidence-based activism' entails a collective inquiry associating patients/activists and specialists/professionals in the conjoint fabrics of scientific statements and political claims. From a conceptual standpoint, 'evidence-based activism' sheds light on the ongoing co-production of matters of fact and matters of concern in contemporary technological democracies.

International audience; Attention Deficit Hyperactivity Disorder (ADHD) is an unsettled condition whose history is characterised by controversy among medical professionals. Its emergence has frequently been interpreted as an example of the growing 'medicalisation' of society and the individualisation of social issues. This article examines how groups representing children with ADHD in France and Ireland engage within this contested medical domain to develop different politics of knowledge around the disorder which become visible in their 'epistemic efforts'. These efforts emerge from, and enact, groups' understandings of ADHD as a condition, and frame their development of a politics of healthcare as a basis for articulating claims to appropriate services and treatment. We show how, in Ireland, organisations remain committed to a biomedical approach to ADHD, although their practical efforts are oriented towards complementing medication with nonpharmaceutical treatments. In France, the key parents' group opposes any paradigm that focuses exclusively on one aspect of the disorder, be it social, psychological or neurological; rather, it struggles to 'open up' the scientific domain of ADHD. Our empirical material therefore enables us to demonstrate patients' organisations' politics of knowledge as situated practices which aim to reshape the different networks of expertise on ADHD that exist in each country, and to explore medicalisation as a complex set of processes which is neither a solution to parents' problems, nor an end point for their actions.

Le domaine de la santé a été largement transformé depuis une vingtaine d'années par l'action des associations de patients. Ces associations s'impliquent dans la production et la diffusion de connaissances sur les maladies et les questions de santé ; elles jouent un rôle actif dans l'émergence et la consolidation des mobilisations collectives autour des problèmes de santé ; elles sont reconnues comme des acteurs à part entière de la démocratie sanitaire aux côtés des pouvoirs publics, des professionnels et des acteurs économiques. Face aux mutations pressantes du domaine, elles pensent et explorent de nouvelles formes d'action associatives, de nouveaux modes d'intervention publique. Cet ouvrage rend compte directement de l'expérience des associations, à travers une série de discussions collectives conduites avec une cinquantaine d'entre elles. Ces témoignages éclairent la compréhension du fonctionnement associatif et permettent d'appréhender les défis auxquels les associations sont aujourd'hui confrontées ; ils sont destinés à favoriser le dialogue entre les usagers, le monde politique et les professionnels.