Selfstudy by Questionnaires and Scorecards
Nobody with sindrome di Cornelia de Lange 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 sindrome di Cornelia de Lange has impacted your life, how you develop.
When you discover which aspects of sindrome di Cornelia de Lange 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 sindrome di Cornelia de Lange, is that you will see similarities with others having sindrome di Cornelia de Lange, 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 sindrome di Cornelia de Lange that have approximately provided the same answers to our questionnaires and have similar scorecards.
La sindrome di Cornelia de Lange (CdLS) è una rara malattia genetica di cui molte persone non hanno mai sentito parlare. I bambini con la CdLS "hanno lo stesso aspetto", c'è molta somiglianza nell'aspetto e nel comportamento. Nel 1933, il pediatra olandese Cornelia de Lange ha descritto due bambini con una serie di caratteristiche sorprendentemente simili. La sindrome prese quindi il suo nome.
Il nostro panel internazionale di esperti ha messo insieme una guida completa alla diagnosi e alla gestione della CdLS, collegata qui!