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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.


What medical care may a child with CdLS need?
What medical care may a child with CdLS need? > Feeding and Dental Difficulties
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... > Gastrointestinal Problems > Malrotation; the intestines (or viscera) are twisted
Health difficulties in CdLS... > Senses
Health difficulties in CdLS... > The musculoskeletal system > Upper limb abnormalities:
Health difficulties in CdLS... > The musculoskeletal system > Scoliosis
Cognitive and behavioural characteristics in CdLS > Executive Function
Cognitive and behavioural characteristics in CdLS > Sensory processing
Planning for best quality of life > Medical Care transitioning
Moleculair diagnostic criteria > Mosaicism

About the website contents

All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: info@cdlsWorld.org