Detalles de la búsqueda
1.
Parent-authored memoirs: Lessons in the practice of narrative medicine.
Am J Med Genet A
; 185(9): 2846-2848, 2021 09.
Artículo
en Inglés
| MEDLINE | ID: mdl-33599369
2.
Waiting for a diagnosis in Rubinstein-Taybi: The journey from "ignorance is bliss" to the value of "a label".
Am J Med Genet A
; 185(1): 105-111, 2021 01.
Artículo
en Inglés
| MEDLINE | ID: mdl-33063426
3.
Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy.
Acta Oncol
; 59(8): 975-982, 2020 Aug.
Artículo
en Inglés
| MEDLINE | ID: mdl-32476528
4.
Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study.
Health Qual Life Outcomes
; 18(1): 177, 2020 Jun 10.
Artículo
en Inglés
| MEDLINE | ID: mdl-32522194
5.
Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China.
Health Qual Life Outcomes
; 18(1): 372, 2020 Nov 23.
Artículo
en Inglés
| MEDLINE | ID: mdl-33225969
6.
Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study.
BMC Public Health
; 20(1): 860, 2020 Jun 05.
Artículo
en Inglés
| MEDLINE | ID: mdl-32503483
7.
Understanding genetic learning needs of people affected by rare disease.
J Genet Couns
; 29(6): 1050-1058, 2020 12.
Artículo
en Inglés
| MEDLINE | ID: mdl-32128950
8.
How Cancer Patients Perceive Clinical Trials (CTs) in the Era of CTs: Current Perception and Its Differences Between Common and Rare Cancers.
J Cancer Educ
; 35(3): 545-556, 2020 06.
Artículo
en Inglés
| MEDLINE | ID: mdl-30820925
9.
Returning negative results to individuals in a genomic screening program: lessons learned.
Genet Med
; 21(2): 409-416, 2019 02.
Artículo
en Inglés
| MEDLINE | ID: mdl-29875426
10.
Incorporating the patient perspective in the study of rare bone disease: insights from the osteogenesis imperfecta community.
Osteoporos Int
; 30(2): 507-511, 2019 Feb.
Artículo
en Inglés
| MEDLINE | ID: mdl-30191258
11.
'It would be much easier if we were just quiet and disappeared': Parents silenced in the experience of caring for children with rare diseases.
Health Expect
; 22(6): 1251-1259, 2019 12.
Artículo
en Inglés
| MEDLINE | ID: mdl-31466132
12.
Agreement between mothers', fathers', and children's' ratings on health-related quality of life in children born with esophageal atresia - a German cross-sectional study.
BMC Pediatr
; 19(1): 330, 2019 09 11.
Artículo
en Inglés
| MEDLINE | ID: mdl-31510959
13.
Courtesy Stigma and Social Support: An Exploration of Fathers' Buffering Strategies and Blocking Rationalizations.
Health Commun
; 34(13): 1543-1554, 2019 11.
Artículo
en Inglés
| MEDLINE | ID: mdl-30067393
14.
"It is like a jungle gym, and everything is under construction": The parent's perspective of caring for a child with a rare disease.
Child Care Health Dev
; 45(1): 96-103, 2019 01.
Artículo
en Inglés
| MEDLINE | ID: mdl-30370696
15.
Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic.
Qual Health Res
; 29(6): 889-899, 2019 05.
Artículo
en Inglés
| MEDLINE | ID: mdl-30296923
16.
[Oral Health-Related Quality of Life in Rare Diseases with Oral Manifestations]. / Evaluierung der mundgesundheitsbezogenen Lebensqualität bei seltenen Erkrankungen mit oraler Beteiligung.
Gesundheitswesen
; 81(11): 902-906, 2019 Nov.
Artículo
en Alemán
| MEDLINE | ID: mdl-29653453
17.
Secretan's syndrome: case report.
Acta Chir Belg
; 119(2): 123-124, 2019 Apr.
Artículo
en Inglés
| MEDLINE | ID: mdl-30764721
18.
UK families with children with rare chromosome disorders: Changing experiences of diagnosis and counselling (2003-2013).
Clin Genet
; 93(5): 972-981, 2018 05.
Artículo
en Inglés
| MEDLINE | ID: mdl-29318577
19.
Assessment of distress and quality of life in rare cancers.
Psychooncology
; 27(12): 2740-2746, 2018 12.
Artículo
en Inglés
| MEDLINE | ID: mdl-30171792
20.
Reconstructing normality following the diagnosis of a childhood chronic disease: does "rare" make a difference?
Eur J Pediatr
; 177(4): 489-495, 2018 Apr.
Artículo
en Inglés
| MEDLINE | ID: mdl-29335841