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

Rare Diseases on the Internet: An Assessment of the Quality of Online Information

(2017) Frédéric Pauer et al.   JOURNAL OF MEDICAL INTERNET RESEARCH

Scandcleft randomised trials of primary surgery for unilateral cleft lip and Palate: 9. Parental report of social and emotional experiences related to their 5-year-old child's cleft diagnosis

(2017) Kristin Billaud Feragen et al.   Journal of Plastic Surgery and Hand Surgery

Themes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study

(2016) P. Limperg et al.   HAEMOPHILIA

Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition

(2016) Veronika Waldboth et al.   INTERNATIONAL JOURNAL OF NURSING STUDIES

“I Feel Lucky” – Gratitude Among Young Adults with Phenylketonuria (PKU)

(2016) Plata Sofie Diesen   Journal of Genetic Counseling

Experiences of Being Heterozygous for Fabry Disease: a Qualitative Study

(2016) Charlotte von der Lippe et al.   Journal of Genetic Counseling

Survey of healthcare experiences of Australian adults living with rare diseases

(2016) Caron Molster et al.   Orphanet Journal of Rare Diseases

Persons with Haemophilia in Sweden- Experiences and Strategies in Everyday Life. A Single Centre Study

(2015) Elisabeth Brodin et al.   PLoS One

Participation in society for people with a rare diagnosis

(2015) Gunilla Jaeger et al.   Disability and Health Journal

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

Issues in the ageing individual with haemophilia and other inherited bleeding disorders: understanding and responding to the patients’ perspective

(2013) N. Smith et al.   HAEMOPHILIA

Rare-disease genetics in the era of next-generation sequencing: discovery to translation

(2013) Kym M. Boycott et al.   NATURE REVIEWS GENETICS

Exploring quality of life in Italian patients with rare disease: a computer-aided content analysis of illness stories

(2013) Andrea Caputo   Psychology Health & Medicine

The need for worldwide policy and action plans for rare diseases

(2012) John Forman et al.   ACTA PAEDIATRICA

How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient–physician interaction

(2012) Karolina Budych et al.   HEALTH POLICY

A qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophilia

(2011) J. NILSON et al.   HAEMOPHILIA

Quality of life in rare genetic conditions: A systematic review of the literature

(2010) Julie S. Cohen et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

The importance of rare diseases: from the gene to society

(2010) J. A. Dodge et al.   ARCHIVES OF DISEASE IN CHILDHOOD

Methods for the synthesis of qualitative research: a critical review

(2009) Elaine Barnett-Page et al.   BMC Medical Research Methodology

How individuals with phenylketonuria experience their illness: an age-related qualitative study

(2009) E. Vegni et al.   CHILD CARE HEALTH AND DEVELOPMENT

Qualitative Approaches in Craniofacial Research

(2009) Pauline A. Nelson   CLEFT PALATE-CRANIOFACIAL JOURNAL

Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers–Danlos syndrome

(2009) Britta Berglund et al.   DISABILITY AND REHABILITATION

What, if anything, is specific about having a rare disorder? Patients’ judgements on being ill and being rare

(2009) Caroline Huyard   HEALTH EXPECTATIONS

Methods for the thematic synthesis of qualitative research in systematic reviews

(2008) James Thomas et al.   BMC Medical Research Methodology

Cost effectiveness of the Expert Patients Programme (EPP) for patients with chronic conditions

(2008) G Richardson et al.   JOURNAL OF EPIDEMIOLOGY AND COMMUNITY HEALTH

Disease Rarity, Carrier Status, and Gender: A Triple Disadvantage for Women with Fabry Disease

(2008) Andrea L. Gibas et al.   Journal of Genetic Counseling

Empowerment of patients: lessons from the rare diseases community

(2008) Ségolène Aymé et al.   LANCET