The Imperative for Patient-Centred Research to Develop Better Quality Services in Rare Diseases Karen FaceyHelle Ploug Hansen Editorial 24 January 2015 Pages: 1 - 3
Personal Reflections of a Patient Representative in an Appraisal Committee Cees Smit Commentary 26 September 2014 Pages: 5 - 10
An Asia Pacific Alliance for Rare Diseases Durhane Wong-RiegerWilliam ClaxtonLucy Hickinbotham Commentary 18 December 2014 Pages: 11 - 17
Caregiver Preferences for Emerging Duchenne Muscular Dystrophy Treatments: A Comparison of Best-Worst Scaling and Conjoint Analysis Ilene L. HollinHolly L. PeayJohn F. P. Bridges Leading Article 19 December 2014 Pages: 19 - 27
Involving Patients in Reducing Decision Uncertainties Around Orphan and Ultra-Orphan Drugs: A Rare Opportunity? Devidas MenonTania StafinskiHilary Short Systematic Review 17 December 2014 Pages: 29 - 39
How Narrative Journalistic Stories Can Communicate the Individual’s Challenges of Daily Living with Amyotrophic Lateral Sclerosis Jørgen JeppesenJes RahbekHelle Ploug Hansen Original Research Article 18 September 2014 Pages: 41 - 49
Adopting a Sustainable Community of Practice Model when Developing a Service to Support Patients with Epidermolysis Bullosa (EB): A Stakeholder-Centered Approach Rosemary Joan GowranAvril KennanMark Devlin Original Research Article 28 November 2014 Pages: 51 - 63
Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study Maya Doyle Original Research Article 18 September 2014 Pages: 65 - 73
Development and Use of New Therapeutics for Rare Diseases: Views from Patients, Caregivers, and Advocates Aaron S. KesselheimSarah McGrawJoshua J. Gagne Original Research Article 02 November 2014 Pages: 75 - 84
Identifying the Benefits and Risks of Emerging Treatments for Idiopathic Pulmonary Fibrosis: A Qualitative Study John F. P. BridgesVictoria Federico PalyDolly Kervitsky Original Research Article 31 July 2014 Pages: 85 - 92
Challenges in Measuring the Societal Value of Orphan Drugs: Insights from a Canadian Stated Preference Survey Nick DragojlovicShirin RizzardoLarry D. Lynd Original Research Article 14 January 2015 Pages: 93 - 101
Developing a Patient-Directed Policy Framework for Managing Orphan and Ultra-Orphan Drugs Throughout Their Lifecycle Devidas MenonTania StafinskiDurhane Wong-Rieger Original Research Article Open access 06 January 2015 Pages: 103 - 117
