Chasing cures: Rewards and risks for rare disease patient organisations involved in research

https://hdl.handle.net/10536/DRO/DU:30108991
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posted on 2024-06-04, 07:48 authored by D Pinto, Dominique MartinDominique Martin, R Chenhall

Chasing cures: Rewards and risks for rare disease patient organisations involved in research

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DOI - Is version of https://doi.org/10.1057/s41292-017-0061-4

Location

Basingstoke, Eng.

Language

English

Publication classification

C Journal article, C1 Refereed article in a scholarly journal

Copyright notice

2017, Macmillan Publishers Ltd

Journal

BioSocieties

Volume

13

Pagination

123-147

ISSN

1745-8552

eISSN

1745-8560

Issue

1

Publisher

PALGRAVE MACMILLAN LTD

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Categories

Keywords

Social Sciences Social Sciences, Biomedical Biomedical Social Sciences patient organisations rare disease research public and patient involvement ADVOCACY ORGANIZATIONS PHARMACEUTICAL-INDUSTRY BIOMEDICAL-RESEARCH PUBLIC INVOLVEMENT SOCIAL-MOVEMENTS HEALTH ADVOCACY DISCOVERY CONSUMER SCIENCE GENETICS 5001 Applied ethics

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