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 RTS' 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; or 'the map' on the home page. Go directly to:
Through the menu 'News', you can quickly navigate to:
You can quickly navigate to the following via the menu 'Events' or the block on the homepage 'Meet Each Other':
You can!
The Supportgroup for this Rare Disease is for parents, family members, friends, interested individuals, and supporters of someone with a Rare Disease.
- Joining
- As a member, you will be invited to the annual family day and educational events where you can learn more about the syndrome. You will receive our glossy EnzovooRTS and connect with peers in our private community. Additionally, you will receive our brochure containing valuable information and heartwarming stories from other parents.
- How to Join
- Go to 'Meet us,' and at the bottom of this page, you will find the instructions; Join us...
- Register
- If you want to (and are ready), you can register yourself on this website. You can then actively participate by asking your own questions, sharing your story, engaging in discussions in our themed rooms, or learning more about RD by filling out our questionnaires. This way, much of what you find here has also been contributed by others; add your piece to this treasure trove of information!
- Our Facebook Group
- Visit the 'Meet us' page and click on the Facebook group link. The Facebook group is highly suitable for exploration. Others can share useful tips, and you can also share your own experiences.
The option above to 'register' provides you access to our experts, and the stories you share there may be included in the newsletter and added to the database so that others can benefit from them (cross-border).
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.
