title: The imperative for patient-centred research to develop better quality services in rare diseases.
authors.affiliation: Evidence Based Health Policy Consultant, Woodlands Lodge, Buchanan Castle Estate, Drymen, G63 0HX, UK, k.facey@btinternet.com.
authors.forename: Karen
authors.initials: K
authors.lastname: Facey
authors.forename: Helle Ploug
authors.initials: HP
authors.lastname: Hansen
mesh_terms: D006302:Health Services Research; D006801:Humans; D018802:Patient-Centered Care / Q000592:standards*; D058996:Quality Improvement; D035583:Rare Diseases / Q000628:therapy*