title: Improving access to medicines: empowering patients in the quest to improve treatment for rare lethal diseases.
authors.affiliation: Lightfoot Solutions Group Limited, Bracknell, Berkshire, UK.
authors.forename: Les
authors.initials: L
authors.lastname: Halpin
authors.affiliation: Oxford Centre for Neuroethics, University of Oxford, Oxford, UK.
authors.forename: Julian
authors.initials: J
authors.lastname: Savulescu
authors.affiliation: Nuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital, Oxford, UK.
authors.forename: Kevin
authors.initials: K
authors.lastname: Talbot
authors.affiliation: Nuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital, Oxford, UK.
authors.forename: Martin
authors.initials: M
authors.lastname: Turner
authors.affiliation: Neurosciences Department, Barwon Health, The Geelong Hospital, Geelong, Victoria, Australia.
authors.forename: Paul
authors.initials: P
authors.lastname: Talman
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000188:drug therapy*; D057176:Compassionate Use Trials / Q000941:ethics*; D018450:Disease Progression; D017277:Drug Approval / Q000331:legislation & jurisprudence / Q000379:methods / Q000458:organization & administration; D004345:Drug Industry / Q000191:economics / Q000941:ethics; D006297:Health Services Accessibility; D006801:Humans; D007880:Legislation, Drug / Q000639:trends; D018696:Neuroprotective Agents / Q000008:administration & dosage / Q000494:pharmacology; D026706:Paternalism / Q000941:ethics; D026684:Personal Autonomy; D010817:Physician-Patient Relations / Q000941:ethics*; D011209:Power, Psychological; D011788:Quality of Life; D016032:Randomized Controlled Trials as Topic / Q000941:ethics; D035583:Rare Diseases / Q000188:drug therapy*; D035842:Research Subjects / Q000523:psychology; D019782:Riluzole / Q000008:administration & dosage / Q000494:pharmacology; D057566:Self Report; D035501:Uncertainty
chemical_list: D018696:Neuroprotective Agents; D019782:Riluzole
keywords: Autonomy; Clinical trials; Informed Consent; Research Ethics; Research on Special Populations