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This chapter examines patient organizations’ involvement in the production of knowledge and the governance of health. It addresses three questions: (a) what sort of knowledge and expertise do patient organizations bring in? (b) how do they trigger changes in health policy making? and (c) to what extent does the current institutionalization of patient participation strengthen democracy in contemporary societies? This chapter offers empirical and analytical insights into patient organizations’ “evidence-based activism,” a term that captures their efforts to articulate experiential knowledge and credentialed knowledge to give shape to issues they deem important to tackle, and for turning these issues into objects of collective inquiry. It also revisits notions such as “experiential knowledge,” “lay expertise,” “expert patient,” that are not only analytical tools for science and technology studies scholars and social scientists but also part and parcel of today’s institutional parlance. It concludes with a few suggestions for future investigations in health democracy.

Background The success of health research depends on the involvement of participants. Few studies have examined the participation of subjects in cohorts. Drawing on a sociological survey on a French cohort around aging, this study proposes to question the nature of interactions between researchers and subjects that would help to understand the motivations of subjects to participate and remain in health research studies. Methods Qualitative study combining participant observation within the research laboratory that conducted the cohort and semi-structured interviews with subjects included in the cohort and with members of the research team. Results This study highlights the existence of two-way care: from the laboratory to the subjects and from the cohort to researchers. Health research seems to correspond to a complex association between subjects concerned with aging and the expected benefits of exceptional monitoring. Research is incorporated into subjects’ daily lives, allowing a shift in the purpose of research from overmedicalization to medical safety that subjects experienced as a form of care. Conclusions In cohort studies, care is understood as a form of attention to the person through high-quality medical follow-up. Aging is turned into a matter of concern that subjects, in collaboration with researchers, strive to control.

International audience; The contribution of patients’ and users’ associations to health democracy . Since theKouchner law of 2002, health democracy has transformed the governance of the health system.All too often, however, institutions bypass patients’ and users’ associations on the grounds that theyare biased and therefore unrepresentative. However, thanks to the surveys they conduct amongthe people concerned, associations are able to identify and discuss problems that professionals areunaware of. In this way, they contribute to health democracy.; Depuis la loi Kouchner de 2002, la démocratie sanitaire a transformé la gouvernance du système desanté. Trop souvent, cependant, les institutions contournent les associations de patients et d’usagersau motif qu’elles sont de parti pris, et donc non représentatives. Or, grâce aux enquêtes qu’elles mènentauprès des personnes concernées, les associations sont en mesure d’identifier et de mettre en discussiondes problèmes que les professionnels ignorent. Elles contribuent ainsi à la démocratie sanitaire.

Ce texte nous offre une lecture à la fois critique et complémentaire d’un article de J. Peneff s’intitulant « le travail du chirurgien : les opérations à cœur ouvert » publié précédemment par la revue (n° 3/97). Les auteurs remettent en question le fondement même du raisonnement de J. Peneff qui assimile par trop l’intervention chirurgicale au travail ouvrier et ignore de ce fait la personne humaine qui subit l’intervention. Pour étayer l’argumentation, les travaux de Hirschauer sont mis à profit. En effet, l’apport de ce dernier est d’insister largement sur la tension entre les forces qui visent à assurer la survie du patient et celles qui agissent sur le corps pour le réparer. Toutefois l’analyse d’Hirschauer s’avère également insuffisante dans la mesure où elle ne prend guère en compte le travail préopératoire et postopératoire, alors que J. Peneff envisage, lui, l’ensemble du processus. Pour les auteurs, l’analyse en étendant le point de vue de Hirschauer doit porter sur la « reconfiguration » des corps et des personnes pendant l’opération chirurgicale ; mais ce travail de « reconfiguration » commence avant même l’opération et se poursuit après l’opération. This critical commentary on “The surgeon’s work: Open heart surgery” (published in issue n° 3/97 of this journal) questions the very basis of Peneff’s argumentation, which likened surgery to ordinary labour and thus overlooks the person who undergoes the operation. Hirschauer’s work is mentioned for its insistence on the tension between the forces which ensure the patient’s survival and those which repair the body. However, Hirschauer’s analysis also, has shortcomings in that it hardly takes a look at the work preceding and following operations, whereas Peneff does take into account the whole process. Although Callon and Rabeharisoa advocate analysing the “reconfiguration” of bodies and persons during surgery itself, they do not think this suffices; for the work of “reconfiguration” starts before an operation, when the patient is selected and continues afterwards in the patient’s life. A comparative reading of Peneff and Hirschauer can detect their complementarity

International audience; Le Fichier national automatisé des empreintes génétiques (FNAEG) est un outil au service de la justice. Tous les jours, les profils génétiques de traces prélevées sur des scènes d’infraction ainsi que de « suspects » y sont comparés et enregistrés. Si le fichier fait parfois parler de lui dans les médias, à l’occasion de grandes affaires criminelles, peu de travaux de recherche en sciences sociales se sont intéressés à son alimentation et à son utilisation, alors qu’il joue un rôle essentiel dans la confection de la preuve ADN. C’est cette lacune que ce chapitre cherche à combler. Dans une perspective STS (Science and Technology Studies), nous avons pénétré dans la « boîte noire » du FNAEG à partir de l'examen des comptes rendus des réunions de son comité technique entre 1998 et 2016. Nous avons suivi deux fils de discussion au sein de ce comité : le premier concernant les catégories de « suspects » visés par la loi et le second concernant le traitement des traces prélevées sur des scènes d’infraction. Sur la catégorie de « suspects », notre enquête montre la vigilance exercée par le comité technique pour que les opérations de prélèvement d’individus soient conformes à la loi (quels individus les enquêteurs sont-ils autorisés à prélever ?), mais aussi pour inciter les enquêteurs à estimer, en conscience, la pertinence de ces prélèvements afin d’assurer leur juridicité, c’est-à-dire leur recevabilité en tant qu’éléments du travail probatoire. Sur le traitement des traces prélevées sur des scènes d’infraction, et tout particulièrement des traces dites de contact qui peuvent être très nombreuses mais aussi dégradées, le comité technique témoigne son souci pour la qualité et le nombre de traces prélevées afin de garantir le bon fonctionnement technique du fichier (que faire des profils génétiques incomplets de traces dégradées ?), et de s’assurer de la pertinence juridique des prélèvements (cela fait-il sens de prélever des traces sur des scènes d’infractions mineures pour lesquelles la réponse pénale est faible ?). Au cœur de ces débats technico-juridiques, nous mettons en évidence le rôle du comité technique du FNAEG dans le maintien de l’équilibre délicat entre politique pénale et politique sécuritaire porté par le fichier.

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.

En quoi consiste la mobilisation associative sur les maladies rares ? Cet article apporte un eclairage sur les raisons pour lesquelles les associations maladies rares se sont donne comme mission la lutte contre leurs maladies, et decrit leur engagement dans la production de connaissances sur leurs maladies et leurs consequences comme faisant partie integrante de cette mission. Au cœur de cette forme d’activisme, que nous avons appelee l’evidence-based activism, se trouve une confrontation inedite entre connaissances experientielles et connaissances savantes pour mobiliser la recherche autour de l’experience et des preoccupations des patients et de leurs familles. L’article met egalement en evidence les effets de cette forme d’activisme sur l’identite et les trajectoires des malades et des professionnels. Enfin, l’article montre le travail effectue par les associations pour faire de la rarete une categorie politique, en l’incarnant au travers d’une dynamique collective de structuration du milieu associatif sur les maladies rares, et en faisant de la notion de rarete un indicateur des problemes auxquels sont confrontes les malades et leurs familles et un argument en faveur de politiques publiques sur ces maladies. En conclusion, l’article propose une reflexion sur la notion de rarete, comme descripteur des rapports complexes entre l’exceptionnel et le commun, le singulier et le general.

International audience

En los ultimos anos, el compromiso de las asociaciones de pacientes - y mas ampliamente los grupos afectados por un problema relacionado con el conocimiento cientifico - en la produccion de conocimiento se ha convertido en un tema clasico en las ciencias sociales. El conocimiento vivencial producido por estas asociaciones y estos grupos son un reto para las instituciones cientificas. Este articulo ofrece algunas pistas que los investigadores interesados en la antropologia del conocimiento podrian explorar para comprender como las instituciones cientificas se vuelven (o no) sensibles a este conocimiento vivencial y a las transformaciones que el conocimiento podria implicar en la gestion de la investigacion y la innovacion.

International audience; Ces dernières années, l’engagement des associations de malades – et plus largement des groupes concernés par un problème impliquant des savoirs scientifiques – dans la production de connaissances est devenu un thème classique en sciences sociales. Les connaissances expérientielles que produisent ces associations et ces groupes constituent un défi pour les institutions scientifiques. Cet article propose quelques pistes que les chercheurs intéressés par l’anthropologie des connaissances pourraient explorer pour comprendre comment les institutions scientifiques se rendent (ou non) sensibles à ces connaissances expérientielles, et aux transformations que ces connaissances pourraient induire sur la gouvernance de la recherche et de l’innovation.

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

DNA Fingerprint Databases and DNA Analyses in Criminal Viewed from the Perspective of Law and Sociology. In the field of police investigations and criminal law, the emergence of genetics has led to new technical and legal tools being developed and to a joint transformation of practices. The latter concern, first, identifying people on the basis of DNA; second, in a more exploratory fashion, predicting suspects’physical appearance on the basis of DNA ; and, finally, the international circulation of genetic data. Based on a current research project focusing on DNA fingerprint databases and the related technology, we explore the following questions : how is interdisciplinarity defined ? What practices does it presuppose? What resources can it offer? What challenges does it create? In the first section of the text, we outline the research objects and questions that we hope to address in our project. In the second section, we provide some points for consideration in discussing the benefits and challenges presented by interdisciplinarity ‘in action’, Dans le domaine des enquêtes de police et du droit pénal, l’irruption de la génétique a conduit à la constitution de nouveaux outils technico-juridiques et à la transformation conjointe des pratiques. Celles-ci concernent d’une part l’identification des personnes sur la base de l’ADN, d’autre part, de façon plus exploratoire, la prédiction de l’apparence physique des suspects à partir de l’ADN, enfin, la circulation internationale des données génétiques. En nous appuyant sur un projet que nous avons engagé, consacré aux fichiers d’empreintes génétiques et à des techniques connexes, nous proposons d’explorer les questions suivantes : comment définit-on l’interdisciplinarité ? Quelles pratiques suppose-t-elle ? Quelles ressources offre-t-elle ? Quels défis fait-elle naître ? Dans une première partie du texte, nous présentons les objets et les questions de recherche que nous souhaitons traiter dans notre projet. Dans une deuxième partie, nous apportons des éléments de réflexion sur les atouts et les défis que présente l’interdisciplinarité lorsqu’elle est « en actes »

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.

The identification of the genes responsible for certain serious diseases and the development of tests for identifying carriers of those genes help to put the individuals concerned in the forefront of ethical decisions. These decisions are unavoidable, especially when available knowledge and techniques have already been broadly disseminated. This article presents the case of a limb-girdle muscular dystrophy patient in Reunion Island who refuses to comprehend the lessons of genetics and to become part of the medical and associative networks that implement and diffuse that knowledge. His refusal is interpreted as the rejection of a form of agency and subjectivity, in which the individual is considered as an autonomous subject forced to choose between a number of pre-established options and responsible for the consequences of his choices. Using definitions of humanity and morality presented by Francois Jullien in his commentary on Mencius, the authors propose to consider that, by refusing, the patient is opti...

The aim of this paper is to highlight the main characteristics of what the authors call 'the economy of qualities'. The authors show that qualifying products and positioning goods are major concerns for agents evolving within the 'economy of qualities'. Competition in such an economy is structured through two basic mechanisms. The first is what the authors propose to call the process of singularization of products. The second is the mechanism whereby consumers are attached to, and detached from, goods that are proposed to them. At the heart of these logics, one can find multiple socio-technical devices that are designed by economic agents, which ensure the distribution of cognitive competencies, and which constantly and finely tune supply and demand. Relying upon Jean Gadrey's work, the authors claim that the economy of qualities is nowhere more effective than in services providing activities, and especially in those sectors that invest heavily in New Information and Communication Technologies (ICTs). Fin...

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.

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.

The article documents and analyzes patients organizations- and groups of activists’ “evidence-based activism†, and the compound dynamic interplay between politics of illness and politics of knowledge it entails in the four condition areas studied: ADHD, Alzheimer, rare diseases and childbirth.

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 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 a collective level.

Qu'est-ce que le marche ? Depuis une quinzaine d'annees, Michel Callon et les chercheurs du centre de sociologie de l'innovation (CSI) de l'ecole des mines se penchent sur cette question si peu discutee par les recherches en economie ; ils l'interrogent dans le prolongement des travaux qu'ils menaient autour de la sociologie de la traduction, dite encore theorie de l'acteur-reseau (ou Actor-Network Theory). Ces nouveaux travaux se caracterisent par l'attention accordee a l'ensemble des acteurs concernes par la formation des marches, au role central des dispositifs techniques et des savoirs scientifiques, a l'importance des pratiques d'experimentation et au processus de qualification des biens et des services. L'ouvrage presente une selection de textes importants qui ont servi de jalons a cette reflexion collective et qui sont toujours d'actualite. Il se clot par un texte original et fondamental de Michel Callon qui explore un nouveau concept, l'agencement marchand ; il propose de le substituer a celui de marche-interface pour rendre compte de l'ensemble des activites et processus desormais au coeur de l'action marchande.

Dans un contexte scientifique et institutionnel bousculé, marqué par le départ à la retraite d'une génération assez nombreuse de chercheurs en sciences humaines et sociales recrutés dans les années 1970, la nouvelle décennie a vu le rajeunissement des membres du Comité de rédaction et le renouvellement du rédacteur en chef de la revue, le sixième en 30 ans, mais qu'est-il advenu de ses orientations scientifiques et thématiques ? Sciences Sociales et Santé semble avoir atteint l'âge de la maturité ; elle apparaît maintenant comme une revue installée dans le paysage éditorial et institutionnel. Elle a obtenu, au niveau national, tous les signes de reconnaissance du milieu scientifique et des institutions comme le CNRS et l'AERES. Elle est indexée dans les grandes bases de données nationales et internationales et possède un impact factor. Elle est également devenue accessible gratuitement, depuis son premier numéro, sur Persée (www.persee.fr) et cela jusqu'aux numéros publiés 3 ans auparavant, soit 27 années de publication à ce jour, donnant ainsi accès à de nombreux tex- tes qualifiés de référence, redevenus accessibles alors qu'ils étaient épuisés depuis de longues années. Elle sera disponible sur CAIRN dès 2013.

Analyses the role of European patients’ organizations in the process of Europeanization of healthcare policies by exploring the types of organizations constituted by European patients’ organizations and the form of activism they develop.

In the health sector, lay expertise refers to two distinct but related phenomena: experiential expertise, i.e. expertise based on the experience of a specific condition, and medical-scientific expertise. A significant part of the activities of patient organizations are devoted to developing both forms of expertise: on the one hand, they collect, shape, analyze their members' testimonies, conduct surveys and produce statistics; on the other hand, they provide a scientific watch, synthesize the academic literature, publish documents for the public or organize conferences. This two-fold expertise is mobilized in actions directed both at empowering of the individual patient as well as at shaping health policies: therefore it contributes to health democracy, understood in the double sense used in the March 4th 2002 Act, i.e. as participation of individuals to decisions regarding their own health and as participation of patients' and users' representatives to the governance of health.

Lay expertise in patient organizations: an instrument for health democracy In the health sector, lay expertise refers to two distinct but related phenomena: experiential expertise, i.e. expertise based on the experience of a specific condition, and medical-scientific expertise. A significant part of the activities of patient organizations are devoted to developing both forms of expertise: on the one hand, they collect, shape, analyze their members' testimonies, conduct surveys and produce statistics; on the other hand, they provide a scientific watch, synthesize the academic literature, publish documents for the public or organize conferences. This two-fold expertise is mobilized in actions directed both at empowering of the individual patient as well as at shaping health policies: therefore it contributes to health democracy, understood in the double sense used in the March 4th 2002 Act, i.e. as participation of individuals to decisions regarding their own health and as participation of patients' and users' representatives to the governance of health.; Dans le domaine de la santé, l'expertise profane recouvre deux réalités différentes qui entretiennent des relations multiples : l'expertise expérientielle, ou expertise tirée de l'expérience d'une condition particulière, et l'expertise médico-scientifique. Les associations de patients déploient une part importante de leur activité à constituer cette double expertise : d'un côté, elles collectent, mettent en forme, analysent les témoignages de leurs adhérents, réalisent des enquêtes et produisent des statistiques ; de l'autre, elles assurent une veille scientifique, produisent des synthèses de la littérature, publient des documents de vulgarisation ou organisent des conférences. Cette expertise, avec ses deux composantes, est mobilisée dans des actions dirigées à la fois vers des patients individuels - il s'agit de renforcer leur capacité d'action -, et vers le " monde de la santé" - professionnels, établissements, réseaux de soins, agences sanitaires, ministère, politiques - afin de peser sur la politique de santé au sens large : elle contribue ainsi pleinement à la démocratie sanitaire, dans l'acception double que lui a donné la loi du 4 mars 2002, i.e. participation des individus aux décisions qui les concernent et participation de leurs représentants à la gouvernance de la santé.

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