Carer burden in rare inherited diseases: a literature review and conceptual model

Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life

(2021) Johannes Boettcher et al.   International Journal of Environmental Research and Public Health

Knowledge and Attitudes of Future Healthcare Professionals Toward Rare Diseases

(2021) Jan Domaradzki et al.   Frontiers in Genetics

Education and information needs for physicians about rare diseases in Spain

(2020) Enrique Ramalle-Gómara et al.   Orphanet Journal of Rare Diseases

Parental health spillover effects of paediatric rare genetic conditions

(2020) You Wu et al.   QUALITY OF LIFE RESEARCH

Feelings of guilt in the general adult population: prevalence, intensity and association with depression

(2020) Tobias Luck et al.   Psychology Health & Medicine

An online survey on burden of illness among families with post-stem cell transplant mucopolysaccharidosis type I children in the United States

(2019) Therese Conner et al.   Orphanet Journal of Rare Diseases

The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

(2019) Kate Khair et al.   HAEMOPHILIA

From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies

(2019) Ryan E. Wiley et al.   HAEMOPHILIA

Assessing the supportive care needs of parents with a child with a bleeding disorder using the Parental Needs Scale for Rare Diseases (PNS‐RD): A single‐centre pilot study

(2019) Kate Khair et al.   HAEMOPHILIA

Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines

(2019) K. Martin et al.   Orphanet Journal of Rare Diseases

Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database

(2019) Stéphanie Nguengang Wakap et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Pathway to diagnosis and burden of illness in mucopolysaccharidosis type VII – a European caregiver survey

(2019) Alexandra Morrison et al.   Orphanet Journal of Rare Diseases

Duchenne muscular dystrophy and caregiver burden: a systematic review

(2018) Erik Landfeldt et al.   DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

(2018) Domingo Palacios-Ceña et al.   International Journal of Environmental Research and Public Health

Living with a rare disorder: a systematic review of the qualitative literature

(2017) Charlotte von der Lippe et al.   Molecular Genetics & Genomic Medicine

Experiences of caregivers of children with inherited metabolic diseases: a qualitative study

(2016) Shabnaz Siddiq et al.   Orphanet Journal of Rare Diseases

Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)

(2016) S. Somanadhan et al.   Orphanet Journal of Rare Diseases

A tortuous route to a capable fatherhood: the experience of being a father to a child with severe haemophilia

(2015) L. Myrin Westesson et al.   HAEMOPHILIA

The supportive care needs of parents caring for a child with a rare disease: A scoping review

(2015) Lemuel J. Pelentsov et al.   Disability and Health Journal

Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel–Lindau disease

(2014) Nadine A Kasparian et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Parents of children with haemophilia at an early age: assessment of perceived stress and family functioning

(2014) A. Torres-Ortuño et al.   HAEMOPHILIA

Understanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United States

(2014) M. DeKoven et al.   HAEMOPHILIA

Haemophilia Experiences, Results and Opportunities (HERO) Study: Influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia

(2014) F. R. M. Y. Cassis et al.   HAEMOPHILIA

Shaping and managing the course of a child's disease: Parental experiences with osteogenesis imperfecta

(2014) Maman Joyce Dogba et al.   Disability and Health Journal

The experience of being a female carrier of haemophilia and the mother of a haemophilic child

(2012) L. Myrin-Westesson et al.   HAEMOPHILIA

Shame, guilt, and depressive symptoms: A meta-analytic review.

(2011) Sangmoon Kim et al.   PSYCHOLOGICAL BULLETIN

Family Burden in Epidermolysis Bullosa is High Independent of Disease Type/Subtype

(2010) S Tabolli et al.   ACTA DERMATO-VENEREOLOGICA

Caregiver's Burden and Quality of Life in Mitochondrial Disease

(2010) Kyung Ran Kim et al.   PEDIATRIC NEUROLOGY

Factors affecting quality of life in epidermolysis bullosa

(2010) Calogero Pagliarello et al.   Expert Review of Pharmacoeconomics & Outcomes Research

Quality of life in patients with epidermolysis bullosa

(2009) S. Tabolli et al.   BRITISH JOURNAL OF DERMATOLOGY