Background Some subtypes of the heterogeneous genetic blistering disease epidermolysis bullosa (EB) lead to lethality in childhood. The severity and extent of blistering leaves these patients living in excruciating pain and distress their entire lives. Parents of these patients experience some specific problems, such as the unfamiliarity of EB amongst healthcare professionals and the suffering and loss of their child.Objective To identify the needs of parents who have lost their child to lethal EB. Methods A qualitative study was performed, comprising semistructured, in-depth interviews with 16 parents. The transcripts were analysed and common themes were identified.Results Parents indicated that they have the need (i) for a fast and correc...
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...
Background: inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi...
Background Some subtypes of the heterogeneous genetic blistering disease epidermolysis bullosa (EB) ...
Introduction. Epidermolysis bullosa (EB) is a group of rare genetic skin disorders. Much is known a...
Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severi...
Epidermolysis Bullosa (EB)is a chronic disease, some types of which may have morbidity a...
Epidermolysis bullosa (EB) is a group of rare inherited bullous skin disorders that differ in nature...
Background & objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin frag...
Aims and objectives To explore the lived experiences of family caregivers of epidermolysis bullosa (...
Background Epidermolysis bullosa is a rare, often severe, genetic disorder characterized by fragilit...
Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and othe...
Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and othe...
Background: Inherited epidermolysis bullosa (EB) is a cluster of rare, genetic skin and mucosal frag...
BackgroundEpidermolysis bullosa (EB) is a group of rare genetic skin disorders that primarily manife...
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...
Background: inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi...
Background Some subtypes of the heterogeneous genetic blistering disease epidermolysis bullosa (EB) ...
Introduction. Epidermolysis bullosa (EB) is a group of rare genetic skin disorders. Much is known a...
Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severi...
Epidermolysis Bullosa (EB)is a chronic disease, some types of which may have morbidity a...
Epidermolysis bullosa (EB) is a group of rare inherited bullous skin disorders that differ in nature...
Background & objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin frag...
Aims and objectives To explore the lived experiences of family caregivers of epidermolysis bullosa (...
Background Epidermolysis bullosa is a rare, often severe, genetic disorder characterized by fragilit...
Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and othe...
Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and othe...
Background: Inherited epidermolysis bullosa (EB) is a cluster of rare, genetic skin and mucosal frag...
BackgroundEpidermolysis bullosa (EB) is a group of rare genetic skin disorders that primarily manife...
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...
Background: inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi...