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Overview of all the frequently asked questions




These questions and answers are collected for and by people with a rare condition (RTS) and professional experts around RTS.

In doing so, we believe to be a helpful resource for those affected by RTS in their search for answers. Rare, but strong together!


Diagnosis and management of Cornelia de Lange syndrome > Introduction
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need?
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Feeding and Dental Difficulties
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Ability to move around and manipulate the environment
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Adult medical Follow-up
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Adult medical Follow-up > Weight Management in Adulthood
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Adult medical Follow-up > How are the Organs Affected in Adults with CdLS?
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Adult medical Follow-up > Risk of Cancer in CdLS
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS...
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > Intestinal malrotation
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > Senses
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > The musculoskeletal system
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > The musculoskeletal system > Upper limb abnormalities:
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > The musculoskeletal system > Scoliosis
Diagnosis and management of Cornelia de Lange syndrome > Cognitive and behavioural characteristics in CdLS > Executive Function
Diagnosis and management of Cornelia de Lange syndrome > Cognitive and behavioural characteristics in CdLS > Sensory processing
Diagnosis and management of Cornelia de Lange syndrome > Cognitive and behavioural characteristics in CdLS > Social functioning including ASDs
Diagnosis and management of Cornelia de Lange syndrome > Planning for best quality of life > Medical Care transitioning
Diagnosis and management of Cornelia de Lange syndrome > Family Empowerment
Diagnosis and management of Cornelia de Lange syndrome > Moleculair diagnostic criteria
Diagnosis and management of Cornelia de Lange syndrome > Moleculair diagnostic criteria > Other genes
Diagnosis and management of Cornelia de Lange syndrome > Moleculair diagnostic criteria > Mosaicism
Diagnosis and management of Cornelia de Lange syndrome > Diagnostic approaches > diagnosis of CdLS prenatally (before birth)

 

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