(Q33568260)

28 July 2017

title

A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network (English)

1 reference

Undiagnosed Diseases Network

28 July 2017

author

5

object named as

Undiagnosed Diseases Network

1 reference

28 July 2017

10

Stephen R Hooper

1 reference

28 July 2017

Rebecca C Spillmann

1

1 reference

28 July 2017

Allyn McConkie-Rosell

2

1 reference

28 July 2017

Loren Pena

3

1 reference

28 July 2017

Yong-Hui Jiang

4

1 reference

28 July 2017

Kelly Schoch

6

1 reference

28 July 2017

Nicole Walley

7

1 reference

28 July 2017

Camilla Sanders

8

1 reference

28 July 2017

Jennifer Sullivan

9

1 reference

28 July 2017

Vandana Shashi

11

1 reference

28 July 2017

publication date

17 April 2017

1 reference

Orphanet Journal of Rare Diseases

28 July 2017

published in

1 reference

28 July 2017

volume

12

1 reference

28 July 2017

issue

1

1 reference

28 July 2017

page(s)

71

1 reference

What's 'difficult'? A multi-stage qualitative analysis of secondary care specialists' experiences with medically unexplained symptoms

28 July 2017

cites work

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

The Genetic Basis of Mendelian Phenotypes: Discoveries, Challenges, and Opportunities

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Socio-economic burden of rare diseases: A systematic review of cost of illness evidence

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

"Is it going to hurt?": the impact of the diagnostic odyssey on children and their families

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

The narrated, nonnarrated, and the disnarrated: conceptual tools for analyzing narratives in health services research.

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Parent adaptation and family functioning in relation to narratives of children with chronic illness

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

The National Institutes of Health Undiagnosed Diseases Program: insights into rare diseases

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Narrating September 11: Race, Gender, and the Play of Cultural Identities

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Between stillness and story: lessons of children's illness narratives

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Why do we need a diagnosis? A qualitative study of parents' experiences, coping and needs, when the newborn child is severely disabled

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Three approaches to qualitative content analysis

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Understanding breast cancer stories via Frank's narrative types

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Restoring the patient's voice. The therapeutics of illness narratives

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

The patient-physician relationship. Narrative medicine: a model for empathy, reflection, profession, and trust

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Parental attitudes toward a diagnosis in children with unidentified multiple congenital anomaly syndromes.

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

Prevalence and patterns of presentation of genetic disorders in a pediatric emergency department

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

The effect of Mendelian disease on human health: a measurement

21 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5392939

The utility of the traditional medical genetics diagnostic evaluation in the context of next-generation sequencing for undiagnosed genetic disorders

21 June 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0623-3

Understanding the narratives of people who live with medically unexplained illness

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0623-3

'I just want permission to be ill': towards a sociology of medically unexplained symptoms.

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0623-3

Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest: Improving Care for Families Experiencing Childhood Cancer

21 January 2018

1 reference

https://api.crossref.org/works/10.1186%2FS13023-017-0623-3

The interface of Medicare coverage decision-making and emerging molecular-based laboratory testing

21 January 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/28416019

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Quest, chaos and restitution: living with chronic fatigue syndrome/myalgic encephalomyelitis

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/28416019

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.1186/S13023-017-0623-3

1 reference

Dimensions Publication ID

28 July 2017

0 references

1 reference

28 July 2017

1 reference