Asbury, C.H. (1985) Orphan Drugs: Medical versus Market Value. Lexington, MA: Lexington Books.
Barataud, B. (1992) Au Nom de Nos Enfants. Paris: J’ai Lu.
Barbot, J. (2002) Les Malades en Mouvements. La Médecine et La Science à L’épreuve Du Sida. Paris: Balland.
Best, R.K. (2012) Disease politics and medical research funding: Three ways advocacy shapes policy. American Sociological Review 77 (5): 780–803.
Boltanski, L. and Thévenot, L. (2006) On Justification. Economies of Worth. Princeton, NJ: Princeton University Press.
Boon, W. and Broekgaarden, R. (2010) The role of patient advocacy organisations in neuromuscular disease R&D – The case of the Dutch neuromuscular disease association VSN. Neuromusuclar Disease 20 (2): 148–151.
Borkman, T.J. (1976) Experiential knowledge: A new concept for the analysis of self-help groups. Social Science Review 50 (33): 445–456.
Brewer, G.J. (ed.) (1983) Orphan Drugs and Orphan Diseases: Clinical Realities and Public Policy. New York: Alan R. Liss.
Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R. and Gasior Altman, R. (2004) Embodied health movements: New approaches to social movements in health. Sociology of Health & Illness 26 (1): 50–80.
Callon, M. (2007) An essay on the growing contribution of economic markets to the proliferation of the social. Theory, Culture & Society 24 (7–8): 139–163.
Callon, M., Méadel, C. and Rabeharisoa, V. (2002) The economy of qualities. Economy and Society 31 (2): 194–217.
Crompton, H. (2001) Rett Syndrome, rare diseases and UK research. Manchester, UK: Manchester Metropolitan University Business School Working Paper Series, WPS021.
Crompton, H. (2007) Mode 2 knowledge production: Evidence from orphan drug networks. Science and Public Policy 34 (3): 199–211.
Dodier, N. (2003) Leçons Politiques De l’épidémie De Sida. Paris: Editions de l’EHESS.
Dresser, R. (2001) When Science Offers Salvation: Patient Advocacy and Research Ethics. Oxford, UK: Oxford University Press.
Dubois, A. and Gadde, L.-E. (2002) Systematic combining: An abductive approach to case research. Journal of Business Research 55 (7): 553–560.
Dumit, J. (2006) Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science and Medicine 62 (3): 577–590.
Eisenhardt, K.M. and Graebner, M.E. (2007) Theory building from cases: Opportunities and challenges. Academy of Management Journal 50 (1): 25–32.
Epstein, S. (1995) The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology, & Human Values 20 (4): 408–437.
Epstein, S. (1996) Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley, CA: University of California Press.
Epstein, S. (2007) Inclusion. The Politics of Difference in Medical Research. Chicago, IL: The University of Chicago Press.
Eyal, G. (2010) The Autism Matrix. Cambridge, MA: Polity Press.
Frickel, S., Gibbon, S., Howard, J., Kempner, J., Ottinger, G. and Hess, D.J. (2010) Undone science: Charting social movement and civil society challenges to research agenda setting. Science, Technology & Human Values 35 (4): 44–73.
Gibbon, S. and Novas, C. (eds.) (2008) Biosocialities, Genetics and the Social Sciences. Making Biologies and Societies. Oxon: Routledge.
Glaser, B.G. and Strauss, A.L. (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago, IL: Aldine Publishing Company.
Hedgecoe, A.M. (2003) Expansion and uncertainty: Cystic fibrosis, classification and genetics. Sociology of Health and Illness 25 (1): 50–70.
Hess, D.J. (2007) Alternative Pathways in Science and Industry: Activism, Innovation, and the Environment in an Era of Globalization. Cambridge, MA: MIT Press.
Hogan, A.J. (2013) Locating genetic disease: The impact of clinical nosology on biomedical conceptions of the human genome (1966–1990). New Genetics and Society 32 (1): 78–96.
Huyard, C. (2009a) Who rules rare disease associations? A framework to understand their action. Sociology of Health & Illness 31 (7): 979–993.
Huyard, C. (2009b) What, if anything, is specific about having a rare disorder? Patients’ judgements on being ill and being rare. Health Expectations 12 (4): 361–370.
Huyard, C. (2011) Quand la puissance publique fait surgir et équipe une mobilisation protestataire. L’invention des ‘maladies rares’ aux Etats-Unis et en Europe. Revue Française de Sciences Politiques 2 (61): 183–200.
Keating, P. and Cambrosio, A. (2012) Cancer on Trial: Oncology as a New Style of Practice. Chicago, IL: The University of Chicago Press.
Lippman, A (1991) Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. American Journal of Law and Medicine 17 (1–2): 15–50.
Löfgren, H., de Leeuw, E. and Leahy, M. (eds.) (2011) Democratizing Health. Consumer Groups in the Policy Process. Cheltenham, UK: Edward Elgar.
Lyle, W.H. (1975) Letter: More on ‘orphan’ drugs. New England Journal of Medicine 292 (15): 813–814.
Marks, H. (1997) The Progress of Experiment: Science and Therapeutic Reforms in the United States 1900–1990. Cambridge, UK: Cambridge University Press.
Martucelli, D. (2010) La Société Singulariste. Paris: Armand Colin.
Moreira, T. (2012) Health care standards and the politics of singularity: Shifting in and out of context. Science, Technology & Human Values 37 (4): 307–331.
Navon, D. (2011) Genomic designation: How genetics can delineate new, phenotypically diffuse medical categories. Social Studies of Science 41 (2): 203–226.
Navon, D. and Shwed, U. (2012) The chromosome 22q11.2 deletion: from the unification of biomedical field to a new kind of condition. Social Science & Medicine 75 (9): 1633–1641.
No authors listed (1968) ‘Homeless’ or ‘orphan’ drugs. American Journal of Hospital Pharmacy 25 (11): 609.
Novas, C. (2006) The political economy of hope: Disease advocacy organisations, science and biovalue. BioSocieties 1 (3): 289–305.
Nunes, J.A., Matias, M. and Filipe, A.M. (2007) Patient organizations as emerging actors in the health arena: The case of Portugal. RECIIS 1 (1): 1007–110.
O’Donovan, O. (2007) Corporate colonisation of health activism? Irish health advocacy organisations’ modes of engagement with pharmaceutical corporations. International Journal of Health Services 37 (4): 711–733.
Panofsky, A. (2011) Generating sociability to drive science: Patient advocacy organizations and genetics research. Social Studies of Science 41 (1): 31–57.
Paterson, F. and Barral, C. (1994) L’association Française contre les Myopathies: Trajectoire d’une association d’usagers et construction associative d’une maladie. Sciences Sociales et Santé 12 (2): 79–111.
Rabeharisoa, V. (2003) The struggle against neuromuscular diseases in France and the emergence of the ‘partnership model’ of patient organisation. Social Science and Medicine 57 (11): 2127–2136.
Rabeharisoa, V. and Bourret, P. (2009) Stating and weighting evidence in biomedicine: Comparing clinical practices in cancer genetics and psychiatric genetics. Social Studies of Science 39 (5): 691–715.
Rabeharisoa, V. and Callon, M. (1999) Le Pouvoir Des Malades. L’Association Française Contre Les Myopathies & La Recherche. Paris: Les Presses de l’Ecole des mines de Paris.
Rabeharisoa, V. and Callon, M. (2004) Patients and scientists in French muscular dystrophy research. In: S. Jasanoff (ed.) States of Knowledge. The Co-Production of Science and Social Order. London and New York: Routledge, pp. 142–160.
Rabinow, P. (1999) Artificiality and enlightenment: From sociobiology to biosociality. In: M. Biagioli (ed.) The Science Studies Reader. New York and London: Routledge, pp. 407–416.
Rapp, R., Heath, D. and Taussig, K.-S. (2001) Genealogical disease: Where hereditary abnormality, biomedical explanation, and family responsibility meet. In: F. Franklin and S. McKinnon (eds.) Relative Values: Reconfiguring Kinship Studies. Durham, NC: Duke University Press, pp. 384–409.
Rosanvallon, P. (2008) La Légitimité Démocratique: Impartialité, Réflexivité, Proximité. Paris: Seuil.
Silverman, C. (2011) Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton, NJ: Princeton University Press.
Stockdale, A. (1997) Conflicting Perspectives: Coping with Cystic Fibrosis in the Age of Molecular Medicine. PhD Thesis, Brandeis University.
Von Gizycki, R. (1987) Cooperation between medical researchers and a self-help movement: The case of the German retinitis pigmentosa society. In: S. Blume (ed.) The Social Direction of the Public Sciences. Dordrecht, The Netherlands: D. Reidel, pp. 75–88.