Descriptive title Parents of children with rare diseases face pervasive challenges in meeting
medical and social care needs. Existing research on the parents' experience of caring for a …

Highlights•Focus groups used to investigate needs of parents of a child with a rare
disease.•Parents felt socially isolated caring for their child with a rare disease.•Often parents …

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently
unique, collectively, these conditions are quite common. Many rare diseases are diagnosed …

Background Parents caring for a child affected by a rare disease have unmet needs, the
origins of which are complex and varied. Our aim was to determine the supportive care …

Background Parent experiences of caring for children with neurodevelopmental disease
have been silenced and constrained by social, political and health influences. There is a …

Background Caring for a child with a chronic disease may be demanding and stressful.
When a child has a rare condition, the impact of care on parents is amplified due to the rarity …

Background Challenges faced by children diagnosed with a rare disease or complex
condition and their family members are often characterized by disease-specific complexities …

In this paper, we propose a vision of the role of parent/caregiver with children affected by a
rare disease. This vision is rooted in data obtained from our own research; however, our …

Background Parents caring for a child with a rare disease report unmet needs, the origins of
which are varied and complex. Few studies have systematically attempted to identify the …

Background A rare disease (RD) diagnosis and therapy can affect the family's quality of life
and mental health. A lack of information and missing care options lead to helplessness and …