| nr |
titel |
auteur |
tijdschrift |
jaar |
jaarg. |
afl. |
pagina('s) |
type |
| 1 |
Adopting a Sustainable Community of Practice Model when Developing a Service to Support Patients with Epidermolysis Bullosa (EB): A Stakeholder-Centered Approach
|
Gowran, Rosemary Joan
|
|
2014
|
8 |
1 |
p. 51-63
|
artikel
|
| 2 |
An Asia Pacific Alliance for Rare Diseases
|
Wong-Rieger, Durhane
|
|
2014
|
8 |
1 |
p. 11-17
|
artikel
|
| 3 |
Caregiver Preferences for Emerging Duchenne Muscular Dystrophy Treatments: A Comparison of Best-Worst Scaling and Conjoint Analysis
|
Hollin, Ilene L.
|
|
2014
|
8 |
1 |
p. 19-27
|
artikel
|
| 4 |
Challenges in Measuring the Societal Value of Orphan Drugs: Insights from a Canadian Stated Preference Survey
|
Dragojlovic, Nick
|
|
2015
|
8 |
1 |
p. 93-101
|
artikel
|
| 5 |
Developing a Patient-Directed Policy Framework for Managing Orphan and Ultra-Orphan Drugs Throughout Their Lifecycle
|
Menon, Devidas
|
|
2015
|
8 |
1 |
p. 103-117
|
artikel
|
| 6 |
Development and Use of New Therapeutics for Rare Diseases: Views from Patients, Caregivers, and Advocates
|
Kesselheim, Aaron S.
|
|
2014
|
8 |
1 |
p. 75-84
|
artikel
|
| 7 |
How Narrative Journalistic Stories Can Communicate the Individual’s Challenges of Daily Living with Amyotrophic Lateral Sclerosis
|
Jeppesen, Jørgen
|
|
2014
|
8 |
1 |
p. 41-49
|
artikel
|
| 8 |
Identifying the Benefits and Risks of Emerging Treatments for Idiopathic Pulmonary Fibrosis: A Qualitative Study
|
Bridges, John F. P.
|
|
2014
|
8 |
1 |
p. 85-92
|
artikel
|
| 9 |
Involving Patients in Reducing Decision Uncertainties Around Orphan and Ultra-Orphan Drugs: A Rare Opportunity?
|
Menon, Devidas
|
|
2014
|
8 |
1 |
p. 29-39
|
artikel
|
| 10 |
Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study
|
Doyle, Maya
|
|
2014
|
8 |
1 |
p. 65-73
|
artikel
|
| 11 |
Personal Reflections of a Patient Representative in an Appraisal Committee
|
Smit, Cees
|
|
2014
|
8 |
1 |
p. 5-10
|
artikel
|
| 12 |
The Imperative for Patient-Centred Research to Develop Better Quality Services in Rare Diseases
|
Facey, Karen
|
|
2015
|
8 |
1 |
p. 1-3
|
artikel
|
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