Add to ORKGParenting a child with a rare genetic disorder has special difficulties, because diagnosis may be delayed or undetermined, support groups may be small and geographically scattered, and healthcare skills and resources limited. Ectodermal dysplasia (ED) is a life limiting condition of the central and peripheral nervous systems. It is associated with significant infant morbidity and mortality, with risks greatest in the first two years of life. For parents caring for a child with ED, this period is often a time of stress and uncertainty. Currently, there is a dearth of literature which reports on the experiences and support needs of parents caring for a child with ED. The aim of this chapter was to provide an in-depth account of the experience...
Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severi...
This volume is divided into three distinct parts. First, the literature review focuses on the experi...
When a child with special needs is born, parents can simultaneously face happiness and anguish. Tris...
Parenting a child with a rare genetic disorder has special difficulties, because diagnosis may be de...
Parenting a child with a rare genetic disorder has special difficulties, because diagnosis may be de...
The aim of this research was to investigate the experiences of families whose child was diagnosed wi...
Background: An inability to breastfeed is a common source of maternal distress. Genetic disorders ca...
Introduction. Epidermolysis bullosa (EB) is a group of rare genetic skin disorders. Much is known a...
There are few studies that exist which focus specifically on parents with a child with a rare diseas...
Background: Parents caring for a child affected by a rare disease have unmet needs, the origins of w...
One of the most commonly recognized intellectual disabilities is trisomy 21, also known as Down's sy...
Several rare diseases are regularly identified during the prenatal and perinatal periods, including ...
Background: Parents caring for a child with a rare disease report unmet needs, the origins of which ...
Background Some subtypes of the heterogeneous genetic blistering disease epidermolysis bullosa (EB) ...
When a child presents with non-specific characteristics such as subtle dysmorphic features, developm...
Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severi...
This volume is divided into three distinct parts. First, the literature review focuses on the experi...
When a child with special needs is born, parents can simultaneously face happiness and anguish. Tris...
Parenting a child with a rare genetic disorder has special difficulties, because diagnosis may be de...
Parenting a child with a rare genetic disorder has special difficulties, because diagnosis may be de...
The aim of this research was to investigate the experiences of families whose child was diagnosed wi...
Background: An inability to breastfeed is a common source of maternal distress. Genetic disorders ca...
Introduction. Epidermolysis bullosa (EB) is a group of rare genetic skin disorders. Much is known a...
There are few studies that exist which focus specifically on parents with a child with a rare diseas...
Background: Parents caring for a child affected by a rare disease have unmet needs, the origins of w...
One of the most commonly recognized intellectual disabilities is trisomy 21, also known as Down's sy...
Several rare diseases are regularly identified during the prenatal and perinatal periods, including ...
Background: Parents caring for a child with a rare disease report unmet needs, the origins of which ...
Background Some subtypes of the heterogeneous genetic blistering disease epidermolysis bullosa (EB) ...
When a child presents with non-specific characteristics such as subtle dysmorphic features, developm...
Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severi...
This volume is divided into three distinct parts. First, the literature review focuses on the experi...
When a child with special needs is born, parents can simultaneously face happiness and anguish. Tris...