What, if anything, is specific about having a rare disorder? Patients' judgements on being ill and being rare.
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Notification and support for people exposed to the risk of Creutzfeldt-Jakob disease (CJD) (or other prion diseases) through medical treatment (iatrogenically)Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer supportThe "technoscientization" of medicine and its limits: technoscientific identities, biosocialities, and rare disease patient organizations.Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents' experience and caring needs.Cognitive and Affective Uses of a Thoracic Outlet Syndrome Facebook Support Group.Disclosures of Cystic Fibrosis-Related Information to Romantic Partners.The lived experience of having a rare medical disorder: Hermansky-Pudlak syndrome.Policy framework for rare disease health disparities.Living with and treating rare diseases: experiences of patients and professional health care providers.Expectations, hopes and moral norms.Living with a rare disorder: a systematic review of the qualitative literature.The lived experience of Taiwanese mothers of a child diagnosed with adrenoleukodystrophy.Health-related quality of life among adults with diverse rare disorders.Exploring quality of life in Italian patients with rare disease: a computer-aided content analysis of illness stories.A content analysis of cognitive and affective uses of patient support groups for rare and uncommon vascular diseases: comparisons of may thurner, thoracic outlet, and superior mesenteric artery syndrome.General and Health Information Challenges of Patients With Rare Diseases: The Importance of Health Information Provision and Web Sites for Locating Rare Disease ResourcesOvercoming barriers to the involvement of deafblind people in conversations about research: recommendations from individuals with Usher syndrome
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What, if anything, is specific about having a rare disorder? Patients' judgements on being ill and being rare.
description
article científic
@ca
article scientifique
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articolo scientifico
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artigo científico
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bilimsel makale
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scientific article published on 14 October 2009
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vedecký článok
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vetenskaplig artikel
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videnskabelig artikel
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vědecký článek
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name
What, if anything, is specific ...... s on being ill and being rare.
@en
What, if anything, is specific ...... s on being ill and being rare.
@nl
type
label
What, if anything, is specific ...... s on being ill and being rare.
@en
What, if anything, is specific ...... s on being ill and being rare.
@nl
prefLabel
What, if anything, is specific ...... s on being ill and being rare.
@en
What, if anything, is specific ...... s on being ill and being rare.
@nl
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P1433
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What, if anything, is specific ...... ts on being ill and being rare
@en
P2093
Caroline Huyard
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P304
P356
10.1111/J.1369-7625.2009.00552.X
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2009-10-14T00:00:00Z