Página de soporte de WaihonaPedia

Estructura de este sitio


Este sitio web es mantenido por voluntarios. Eso significa que se hace con la mejor de las intenciones, pero usted puede tener sugerencias para mejorarla. Le invitamos a compartir estas ideas con nosotros. O, si se siente atraído por este síndrome Y tiene experiencia en la creación de páginas de Internet, inscríbase como voluntario para ayudar a que este sitio sea aún mejor.

También puede contribuir a este sitio web y al intercambio de conocimientos sobre el SPI, describiendo y publicando su experiencia en la sección "Noticias e historias".

Cómo moverse por este sitio web

websiteNavigation

A continuación le explicamos cómo orientarse en este sitio

A continuación explicamos cómo orientarse en este sitio

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.

Lo anterior muestra el formato. Si una pieza aún no está traducida, obtendrá el texto/página en INGLÉS por defecto. Entre todos mantenemos este sitio web al día. El administrador se asegurará de que el sitio web tenga el diseño correcto, después de lo cual la gente puede poner los textos en los encabezados correctos por sí misma.

Observaciones generales:

  1. Juntos, la junta directiva, los asesores médicos y los invitados son responsables de que se publiquen regularmente nuevos blogs y de que la información se mantenga actualizada.
  2. Cuida de escribir en un español correcto, corrige los errores tú mismo en lugar de pedir al autor que lo corrija.