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Orphanet Journal of Rare Diseases
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October 17, 2022
Children with a rare congenital genetic disorder: a systematic review of parent experiences
Charlotte von der Lippe, Ingrid Neteland, Kristin Billaud Feragen
European Journal of Medical Genetics
|
January 24, 2020
Caring for a child with Bardet-Biedl syndrome: A qualitative study of the parental experiences of daily coping and support
Deniz Zelihić, Finn R Hjardemaal, Charlotte von der Lippe
Molecular Genetics & Genomic Medicine
|
November 28, 2017
Living with a rare disorder: a systematic review of the qualitative literature
Charlotte von der Lippe, Plata S Diesen, Kristin B Feragen
Qualitative Health Research
|
November 4, 2020
Primary Immunodeficiency Diseases and Gastrointestinal Distress: Coping Strategies and Dietary Experiences to Relieve Symptoms
Katrine K Brede, Margareta Wandel, Ingrid Wiig, et al.
Health Psychology Open
|
November 10, 2025
Health care professionals' experiences of caring for children with severe epidermolysis bullosa
Elisabeth Daae, Kristin Billaud Feragen, Terje Nærland, et al.
Orphanet Journal of Rare Diseases
|
December 28, 2024
When care hurts: parents' experiences of caring for a child with epidermolysis bullosa
Elisabeth Daae, Kristin Billaud Feragen, Terje Naerland, et al.
Journal of Genetic Counseling
|
March 8, 2016
Experiences of Being Heterozygous for Fabry Disease: a Qualitative Study
Charlotte von der Lippe, Jan C Frich, Anna Harris, et al.
Pediatric Blood & Cancer
|
July 30, 2016
Treatment of hemophilia: A qualitative study of mothers' perspectives
Charlotte von der Lippe, Jan C Frich, Anna Harris, et al.
Journal of Genetic Counseling
|
May 27, 2017
"It was a lot Tougher than I Thought It would be". A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier
Charlotte von der Lippe, Jan C Frich, Anna Harris, et al.
Health Psychology and Behavioral Medicine
|
April 11, 2022
It's more than just lubrication of the skin: parents' experiences of caring for a child with ichthyosis
Elisabeth Daae, Kristin Billaud Feragen, Jan C Sitek, et al.
Page
of 4
Search research articles
Search
Showing results (1-10 of 33) with videos related to
Sort By:
Page
of 4
Orphanet Journal of Rare Diseases
|
October 17, 2022
Children with a rare congenital genetic disorder: a systematic review of parent experiences
Charlotte von der Lippe, Ingrid Neteland, Kristin Billaud Feragen
European Journal of Medical Genetics
|
January 24, 2020
Caring for a child with Bardet-Biedl syndrome: A qualitative study of the parental experiences of daily coping and support
Deniz Zelihić, Finn R Hjardemaal, Charlotte von der Lippe
Molecular Genetics & Genomic Medicine
|
November 28, 2017
Living with a rare disorder: a systematic review of the qualitative literature
Charlotte von der Lippe, Plata S Diesen, Kristin B Feragen
Qualitative Health Research
|
November 4, 2020
Primary Immunodeficiency Diseases and Gastrointestinal Distress: Coping Strategies and Dietary Experiences to Relieve Symptoms
Katrine K Brede, Margareta Wandel, Ingrid Wiig, et al.
Health Psychology Open
|
November 10, 2025
Health care professionals' experiences of caring for children with severe epidermolysis bullosa
Elisabeth Daae, Kristin Billaud Feragen, Terje Nærland, et al.
Orphanet Journal of Rare Diseases
|
December 28, 2024
When care hurts: parents' experiences of caring for a child with epidermolysis bullosa
Elisabeth Daae, Kristin Billaud Feragen, Terje Naerland, et al.
Journal of Genetic Counseling
|
March 8, 2016
Experiences of Being Heterozygous for Fabry Disease: a Qualitative Study
Charlotte von der Lippe, Jan C Frich, Anna Harris, et al.
Pediatric Blood & Cancer
|
July 30, 2016
Treatment of hemophilia: A qualitative study of mothers' perspectives
Charlotte von der Lippe, Jan C Frich, Anna Harris, et al.
Journal of Genetic Counseling
|
May 27, 2017
"It was a lot Tougher than I Thought It would be". A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier
Charlotte von der Lippe, Jan C Frich, Anna Harris, et al.
Health Psychology and Behavioral Medicine
|
April 11, 2022
It's more than just lubrication of the skin: parents' experiences of caring for a child with ichthyosis
Elisabeth Daae, Kristin Billaud Feragen, Jan C Sitek, et al.
Page
of 4