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

Emotional adjustment in amyotrophic lateral sclerosis (ALS)

(2011) Dorothée Lulé et al.   JOURNAL OF NEUROLOGY

Quality of life and measures of quality of life in patients with neuromuscular disorders

(2011) Ted M. Burns et al.   MUSCLE & NERVE

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

Meaning in life in patients with amyotrophic lateral sclerosis

(2010) Martin Johannes Fegg et al.   Amyotrophic Lateral Sclerosis

PRO development: rigorous qualitative research as the crucial foundation

(2010) Kathryn Eilene Lasch et al.   QUALITY OF LIFE RESEARCH

Health-related quality of life measures in genetic disorders: An outcome variable for consideration in clinical trials

(2009) David A. Stevenson et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART C-SEMINARS IN MEDICAL GENETICS

The role of evidence-based medicine and clinical trials in rare genetic disorders

(2009) MC Kruer et al.   CLINICAL GENETICS

Expensive drugs for rare disorders: to treat or not to treat? The case of enzyme replacement therapy for mucopolysaccharidosis VI

(2009) M. Schlander et al.   CURRENT MEDICAL RESEARCH AND OPINION

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

(2009) Caroline Huyard   HEALTH EXPECTATIONS

Drug development for orphan diseases in the context of personalized medicine

(2009) George J. Brewer   Translational Research

Rare diseases: what's next?

(2008) Giuseppe Remuzzi et al.   LANCET

Why rare diseases are an important medical and social issue

(2008) Arrigo Schieppati et al.   LANCET

Clinical research for rare disease: Opportunities, challenges, and solutions

(2008) Robert C. Griggs et al.   MOLECULAR GENETICS AND METABOLISM

Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease

(2007) Elizabeth Penziner et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART B-NEUROPSYCHIATRIC GENETICS