Selfstudy by Questionnaires and Scorecards
Nobody with Cornelia de Lange syndroom is the same! It is important to understand how healthy you are and who you are! Our community provides questionnaires and scorecards that help you to discover how Cornelia de Lange syndroom has impacted your life, how you develop.
When you discover which aspects of Cornelia de Lange syndroom impact your life, we will provide links to fitting information to allow you to develop your personal health system. This saves you from digesting information you do not need directly, keeping your head free, to allow you to enjoy life and give you just that little bit of extra support.
Because if there is something typical for families with a care-intensive person having Cornelia de Lange syndroom, is that you will see similarities with others having Cornelia de Lange syndroom, but that you will also see where you are special. Finding your friend that really matches your lifestyle, has dealt with the same challenges can be improved by finding these people with Cornelia de Lange syndroom that have approximately provided the same answers to our questionnaires and have similar scorecards.
Het Cornelia de Lange syndroom (CdLS) is een zeldzame genetische aandoening. Veel mensen hebben er nooit eerder van gehoord. Het zorgt voor verschillende lichamelijke, cognitieve en medische uitdagingen. Al zijn geen twee kinderen met deze aandoening hetzelfde, er is wel veel overeenkomst in de uiterlijke kenmerken en het gedrag.
Ons internationaal panel van deskundigen heeft een uitgebreide gids voor de diagnose en de zorg (verzorging) van CdLS samengesteld.
