The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation
Bibliographic Data
| ID | 4599332 |
|---|---|
| Authors | Vololona Rabeharisoa (École Normale Supérieure - PSL, corresponding author) |
| Year | 2003 |
| Volume | 57 |
| Issue | 11 |
| Pages | 2127-2136 |
| Publication date | 2003-12-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Social Science & Medicine (JOURNAL) |
| Journal identifiers | ISSN: 0277-9536 • E-ISSN: 1873-5347 |
| Publisher | Elsevier BV (PUBLISHER) |
| DOI | 10.1016/s0277-9536(03)00084-4 |
| PMID | 14512243 |
| OpenAlex | W2018311576 |
| Language | EN |
| Citations received | 60 |
| References cited | 29 |
General partnership · Political science · Power (physics · Public relations · Sociology · Health, Medicine and Society · Healthcare Systems and Practices · Law · Medicine · Mental Health and Patient Involvement
Tactics as Empirical and Conceptual Objects
Patient organizations as emerging actors in the health arena
As organizações de pacientes como atores emergentes no espaço da saúde
As organizações de pacientes como atores emergentes no espaço da saúde
Cancer Clinical Trials
Implementing ‘self-help friendliness’ in German hospitals
The participatory turn in health and medicine
Quand les corps font récit
Social media discourses on prenatal and newborn screening
Health activism and the logic of connective action. A case study of rare disease patient organisations
Rare diseases
Ecologising Invited and Uninvited Patient Participation in Russia
Involving self‐help groups in health‐care institutions
“Putting people in charge of their own health and care?” Using meta‐narrative review and the example of online sexual health services to re‐think relationships between e‐health and agency
The reported impact of public involvement in biobanks
Definitely Maybe
Tactics of association
Nada sobre nós sem nós
Quand les professionnels de santé jouent aux instituteurs
Tentative (id)entities
Practising childbirth activism
Chasing cures
Let’s pull these technologies out of the ivory tower”
In whose pockets? How small Danish patient organisations balance legitimacy, representation and dependency in collaboration with public sector medical researchers and the life science industry
From ‘politics of numbers’ to ‘politics of singularisation’
Commentary
Citizens under the umbrella
Knowledge and uncertainty in Lyme disease detection
The Political Economy of Hope
Spatialising the contentious politics of ADHD
Strategies of stratification
Generating sociability to drive science
The Coproduction of Medical Knowledge
Patient Participation in Health Research
Interpellating Patients as Users
The governance of Aids in Chile
Quelle place pour les associations de malades dans le processus d'innovation médicamenteuse
Oncogene-driven advocacy
How to build an "active" patient? The work of Aids associations in France
From representation to mediation
An Ethnographic-Discursive Approach to Parental Self-Help Groups
The work of composition
The politics of health mobilization in the United States
Introduction
Hegemony in the marketplace of biomedical innovation
Self-help friendliness
Putting knowledge to trial
Patient participation in priority setting
Micropolitics of Rare Diseases in Italy
Embodying experience and expertise
Pragmatics of explanation
The Truth Within
Repolitisations féministes et queer du cerveau
The Forms and Uses of Acquired Prostate Cancer Expertise Among Prostate Cancer Survivors
Lay Involvement and Legitimacy
Genetics and Social Inquiry
The impact of patient advocacy
Who rules rare disease associations? A framework to understand their action
Genomics and cure
Biogovernance Beyond the State
Chronic Illness and the Quality of Life
The Politics of Recognition
Relationships between self-help health organizations and professional health care providers
A selective look at self-help groups in the United States
Experiential Knowledge
The Construction of Lay Expertise
Land of Hope and Glory
La leçon d'humanité de Gino
Les formats de la générosité
Models of disablement, universalism and the international classification of impairments, disabilities and handicaps
Dynamics of participation in a community health project
What is participatory research
Medicine as an Institution of Social Control
Silence, Death, and the Invisible Enemy
Expert and lay participation in the construction of medical knowledge
Chronic illness as biographical disruption
Medical sociology, chronic illness and the body
Medical sociology, chronic illness and the body
| Unique citing works | 60 |
|---|---|
| Citations per year | 2,86 |
| Citation span | 2005 - 2025 (21) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 55 |