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Overview of all the frequently asked questions


We collect questions often asked by people around a rare condition, so you can search if your question is already asked. Each new question that is asked within our community is answered by a forum of experts with different expertises. We add links to helpful information, rewrite them to be understandable and share them. In this way we want to inform families, make them feel empowered and give them just that little bit of extra support.

Because if there is something typical for families with a care-intensive person like a rare condition, is that you will have a lot of questions. And we all want that you can remain upright, by showing that no question is too complicated or not worth asking. And that is what we, as community around a rare condition, are committed to doing with heart and soul.


Moleculair diagnostic criteria
Moleculair diagnostic criteria > Mosaicism
Moleculair diagnostic criteria > Familial recurrence risk
Diagnostic approaches > diagnosis of CdLS prenatally (before birth)
What medical care may a child with CdLS need?
What medical care may a child with CdLS need? > Ability to move around and manipulate the environment
What medical care may a child with CdLS need? > Adult medical Follow-up
What medical care may a child with CdLS need? > Adult medical Follow-up > Weight Management in Adulthood
What medical care may a child with CdLS need? > Adult medical Follow-up > How are the Organs Affected in Adults with CdLS?
What medical care may a child with CdLS need? > Adult medical Follow-up > Risk of Cancer in CdLS
Health difficulties in CdLS...
Health difficulties in CdLS... > Intestinal malrotation
Health difficulties in CdLS... > Senses
Health difficulties in CdLS... > The musculoskeletal system
Health difficulties in CdLS... > The musculoskeletal system > Upper limb abnormalities:
Health difficulties in CdLS... > The musculoskeletal system > Lower limb abnormalities
Health difficulties in CdLS... > The musculoskeletal system > Scoliosis
Cognitive and behavioural characteristics in CdLS > Intellectual Disability
Cognitive and behavioural characteristics in CdLS > Executive Function
Cognitive and behavioural characteristics in CdLS > Sensory processing
Cognitive and behavioural characteristics in CdLS > Adaptive behaviour in CdLS
Cognitive and behavioural characteristics in CdLS > Social functioning including ASDs
Planning of Care > Medische zorg
Family Empowerment

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