Update of the CdLSWorld website

CdLS World federation Council


As you might have noticed the CdLSWorld website is upgraded and updated.

This has been a hard effort for all involved, but we hope it will be worth the trouble.

Why did we need to?

  • As you are aware software needs upgrading to stay SAFE, and MAINTAINABLE. We needed to upgrade in order to stay healthy. With help of XWiki we took the first step in November 2017. After that step the website was ready to receive further improvements.
  • In Europe there is a new law regarding privacy of people. David has posted a reading about this early 2018. I short we need to be very transparant about what records we are keeping of all of you and families registered with the federation, including our Ask The Expert records. We need to tell very clearly what happens with that data. In our case data is NEVER shared with external parties with the exception of Questions asked to Expert that are shared. We NEVER share contact data of registered people, with the exception of National Leaders or member contact persons. 
  • We felt we should take the above two opportunities to FRESH-UP the look of CdLS World. We hope you like it. It should help people looking for a answer, for support or for families to contact to find the right way. It should also act as a HUB of information.

What was the hard work?

The second bullet above (the privacy) required that we reorganized the data of family records. This allows the family to see all data that belongs to him/her in a comprehensive way. The NEW dashboard will give you a good idea of how it looks. It will show 5 boxes (from left-right, top to bottom).

  • Personal Plan
  • Questionairres
  • Experiences
  • Ask the Expert
  • Checklist

As you can see there is still some work being required, but to give you the idea;

  • Personal Plan will tell the family what they agreed with CdLS World, especially for families from non-organized countries and from families from Netherlands and Belgium. For a family from a organized country it will probably be limited if they agree to term & conditions for Ask the Expert
  • Questionnaires. This is related to research. Researchers can offer questionnaires, families should decide if they want to exchange data with researcher
  • Experiences. When families share stories they will keep a overview here. Currently only used for Dutch families, but this will also contain your participations in this blog as soon as you write a blog or comment on it
  • Ask the expert: all questions asked
  • Checklist: If a family asks us to send our knowledge with a certain topic, that topic is checked here

We also tried to make the 'account' data more visual, you should be able to see all your account data by either clicking on your foto/name in the top-right or, if you have shared this data, the foto/name of your CdLS person.
The page you land will have a menu that has 6 (or 5 without a CdLS person) entries by which you can see the data related to your account.

Finally on the dashboard again in the right column you will see the personal extra's like access to this blog...

How can you help

Especially the public pages need your review; all the menu items on the top-left. Focus on the items you will see when not logged in.

Especially for non-english speakers especially France and Spanish need attention. Certain pages might have been translated prior to the upgrade. These translations are still in our database and should be relinked to the page...

Also leave your comments and suggestions, they will be greatly appreciated...


About the website contents

All of the information contained within these questions and answers is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know, contact see below.