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In the last few years, the engagement of patient organizations – and more broadly groups concerned with an issue involving scientific knowledge – in the production of knowledge has become a classic topic in social sciences. The experiential knowledge produced by these groups and organizations is a challenge for scientific institutions. This article proposes a few paths that researchers interested in the anthropology of knowledge could explore in order to understand how scientific institutions become (or not) sensitive to such experiential knowledge and to the transformations that this knowledge could induce in the governance of research and innovation.

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.

The sequencing of the human genome has been a major scientific adventure of the late 20th and early 21st centuries. It has played a decisive role in the development of biomedicine and has led to numerous partnerships between researchers, clinicians, and the pharmaceutical and biotech industries. Patient organizations have also been involved in these partnerships from the very beginning. In France, for instance, the French muscular dystrophy organization, the AFM (Association Francaise Contre les Myopathies), is a classic example. To step up the struggle against neuromuscular diseases, it created its own laboratory, Genethon, which published the first physical maps of the human genome and handed them over to the United Nations Educational, Scientific, and Cultural Organization (UNESCO) in 1993, as a heritage to humanity. ![Figure][1] CREDIT: DURAND FLORENCE/SIPA/NEWSCOM Numerous patient organizations concerned with rare diseases (80% of which are of genetic origin), national alliances, and a European umbrella organization (Eurordis—European Organization on Rare Diseases) have been created and have adopted and adapted this model of partnership with research and health institutions. The “Marche des Maladies Rares” (shown in the photo above) is an annual charity walk organized by the French Alliance on Rare Diseases. This collective mobilization is what led the European Union in 2009 to ask its member states to consider rare diseases a public health issue. The fact that the complete genome sequences are now available has had effects on patient advocacy. First, from my observations in France, patient organizations have multiplied, notably because many genetic abnormalities (and not only genes) have been discovered. Second, thanks to knowledge derived from the sequencing of the complete genome, patient organizations are confronting the complexity of their diseases in their multiple, heterogeneous, and sometimes singular manifestations. As a consequence, the very definition and contours of the conditions they are concerned with sometimes become strategic elements in their self-descriptions. Third, because the same biological pathways might be involved in different conditions, patient organizations are considering cross-condition research subjects and issues. What lessons can be learned from patient organizations' active participation in genetic and now genomic research? First and foremost, it has shown lay people's ability to engage in activities that were considered for a long time as the preserve of specialists. Second, patient organizations have made a crucial contribution to the socialization of genetic diseases. Through their involvement in research, they have fostered a strong sense of solidarity with patients whose diseases were, until recently, considered to be shameful defects that excluded them from a common humanity. [1]: pending:yes

The past few decades have witnessed the increasingly active participation of patient organisations in research activities concerning them. They contribute substantially to the funding of scientific and clinical research. More importantly, certain patient organisations take strategic decisions concerning that research, and contribute to the production of knowledge on their diseases. In France, the AFM (Association Francaise contre les Myopathies-French Muscular Dystrophy Organisation), is a striking illustration. The paper argues that the model of the AFM's engagement in research-the "partnership model"-is original insofar as it renews the power relations between patients and professionals found in two classic models: the "auxiliary model" and the "emancipatory model". Based on a long-term study of the French Muscular Dystrophy Organisation, this "partnership model" is characterised and its implications discussed in three respects: the possible generalisation of the mode of relations it establishes between patients and professionals; its effects on the steering of research; and its consequences for the dynamics of patient organisations movements.

Elucidating the relationships between science and technology holds an important place in the socio-economics of innovation. One of the dimensions of this problem can be formulated as follows: What are the scientific contents of innovative technologies?