Paradoxically, rare diseases are common, collectively affecting 6–10% of the population and
have a huge impact on patients and families, health services, clinicians and the wider …

Objectives Many people living with a rare disease (RD) are cared for by a family member.
Due to a frequent lack of individual RD knowledge from healthcare professionals, the patient …

OBJECTIVE: To examine patterns of community participation and environmental factors that
affect community participation for school-age children with and without disabilities. DESIGN …

Disability Studies is an area of study which examines social, political, cultural, and economic
factors that define'disability'and establish personal and collective responses to difference …

CONTEXT. The number of parents who care for a chronically ill child is increasing. Because
of advances in medical care, parental caring tasks are changing. A detailed description of …

Background The disabled child population now incorporates a group of children and young
people with complex healthcare needs, many of whom are supported by medical devices …

Background Families in I reland remain the main providers of support for people with
Intellectual disabilities, and the aim of this study was to map their life experiences whilst …

Background. Parents of disabled children experience some special problems in their lives. It
is reported that the parents of disabled children experience a very high level of stress …

Parents of children with genetic conditions or impairments stand in a unique position with
regard to choices and dilemmas posed by prenatal screening and testing options offered to …

Children and adolescents with a Fetal Alcohol Spectrum Disorder (FASD) are at high-risk for
developing sleep problems (SPs) triggering daytime behavioral co-morbidities such as …