Structure of this site
This website is maintained by VOLUNTEERS. That means it is done with the best of intentions, but you may have suggestions for improvement. We invite you to share these ideas with us. Or, if you find yourself drawn to this syndrome AND have experience in creating internet pages, sign up as a volunteer to help make this site even better.
You can also contribute to this website and the sharing of knowledge about CdLS, by describing and posting your experience in the 'News and stories' section.
Getting around this website
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:
- Information provided by top experts
- Stories shared by families
- Frequently asked questions (you can also get here from the home menu: ask the expert)
- Parent Questionnaires, which we continue to use to learn together.
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:
- The communities behind this website can help you (scroll down to find a group closest to you).
- The CdLS Federation would like to introduce itself.
- Join private Facebook groups. Several private CdLS Facebook groups are open to family members to join.
- Meet the Cornelia de Lange Syndrome Expertise Centre. Choose the organizations with a flag that you like.
- View our network of experts. Choose the people marked with a flag that you like.
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:
- All activities on the event calendar (worldwide, earliest first). Use the filters on this page to only view events closest to you.
- World Conferences can also be found via the button world conference.
- Surf the group nearest to you (homepage -> the map) and click on their events
- Surf the group nearest to you (homepage -> the map), and click on their website to find out what's being organized.
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.
The above shows the format. If a piece is not yet translated you will get the default ENGLISH text/page. Together we all keep this website up to date. The Administrator will make sure the website gets the right layout after which people can put the texts under the right headings themselves.
General remarks:
- Together, the board, medical advisers and guests are responsible for ensuring that new blogs are posted regularly and that information is kept up-to-date.
- Take care to write in correct English, adjust errors yourself instead of asking the author to correct it.
