WaihonaPedia supportside

Strukturen af dette websted


Dette websted vedligeholdes af FRIVILLIGE. Det betyder, at det gøres med de bedste intentioner, men du kan have forslag til forbedringer. Vi opfordrer dig til at dele disse idéer med os. Eller, hvis du føler dig tiltrukket af dette syndrom OG har erfaring med at oprette internetsider, så meld dig som frivillig til at hjælpe med at gøre dette websted endnu bedre.

Du kan også bidrage til dette websted og til deling af viden om CdLS ved at beskrive og skrive dine erfaringer i afsnittet "Nyheder og historier".

Hvordan man kommer rundt på dette websted

websiteNavigation

Herunder forklarer vi, hvordan du finder rundt på dette websted

You can navigate this website in multiple ways. Depending on your device, there is a menu button at the top or bottom of the screen. There are also blocks you can use on the homepage. Via 'About CdLS' in the menu, you quickly surf to:

If you want information on a specific topic, you can easily find it by typing your search term into the search bar on the homepage. You can also use the search bars on 'Information,' 'Stories of experience,' and 'Ask our Experts.'

The articles in the library are easy to find through our innovative storage structure. All information is marked with one or more topics. Want to know how this works? Then click here.

 

There are different options to find help. You can use the 'meet us' button on the main menu bar; the 'meeting others' block, or 'the map' on the home page. You quickly surf to:

Click 'Stories and News' or the blocks on the homepage, 'Share your story and discover ours!' or the map;

  • Check the group nearest to you if their website has a 'news channel' (homepage -> the map -> your national group -> website).
  • Read the latest news from the Federation.
  • Follow the social media pages related to the group nearest to you (homepage -> the map -> your national group -> social media).

Click 'Events' or the block on the homepage 'Meet each other' you can quickly surf to:

You can!

Our communities are for and from parents, family, friends, interested parties, and supporters of someone with Cornelia de Lange Syndrome.

Join a community
 
As a member, you will be invited to meetings and study events where you can learn more about the syndrome. Maybe you will receive newsletters about CdLS, and you will be able to connect with others around CdLS in private communities. In addition, you could receive books or other material with lots of information and heartwarming stories of other parents.
 
How to join
 
Surf to our homepage -> Scroll down to the Map and click the group nearest to you.
You might be able to join them from that page directly, or you will find a link to their website that will guide you further.

Do you want more personal information or to share something?

Register
 

If you want (and are ready), you can register on this website. You can then actively participate by asking a question of your own, sharing your story, talking in our theme rooms, or learning more about CdLS by filling in our questionnaires.

Other families and professionals have complied with much of what you find here. Add your piece of this treasure trove of information too!

Your community's website
 
Surf the website (or social media) of the community nearest to you to find out about participation options.

Ovenstående viser formatet. Hvis et stykke endnu ikke er oversat, får du den engelske standardtekst/side. Sammen holder vi alle sammen dette websted ajour. Administratoren sørger for, at webstedet får det rigtige layout, hvorefter folk selv kan sætte teksterne ind under de rigtige overskrifter.

Generelle bemærkninger:

  1. Bestyrelsen, de medicinske rådgivere og gæsterne er sammen ansvarlige for, at der regelmæssigt kommer nye blogs, og at oplysningerne holdes ajour.
  2. Sørg for at skrive på korrekt nederlandsk, juster selv fejl i stedet for at bede forfatteren om at rette det.

Translated with www.DeepL.com/Translator (free version)

Om indholdet af hjemmesiden

Alle oplysninger på dette websted er udelukkende til undervisningsformål. Det er din læge, der er det rette sted at få specifik medicinsk rådgivning, diagnoser og behandling. Brug af dette websted sker udelukkende på eget ansvar. Hvis du finder noget, som du mener, der skal rettes eller præciseres, bedes du give os besked på: 

Send en e-mail: info@cdlsWorld.org