Struttura di questo sito
Il sito è gestito da VOLONTARI. Ciò significa che è fatto con le migliori intenzioni, ma potete avere suggerimenti per migliorarlo. Vi invitiamo a condividere queste idee con noi. Oppure, se vi sentite attratti da questa sindrome e avete esperienza nella creazione di pagine Internet, iscrivetevi come volontari per contribuire a rendere questo sito ancora migliore.
Potete anche contribuire a questo sito e alla condivisione delle conoscenze sulla CdLS, descrivendo e pubblicando la vostra esperienza nella sezione "Notizie e storie".
Come muoversi in questo sito
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
- 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 '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.
- 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.
- 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 Rubinstein-Taybi Syndrome.
- Join a community
- As a Sponsor and Supporter, you are invited to the annual meeting day and to study events where you can learn more about the syndrome. You will receive our beautiful glossy (enzovooRTS) about RTS twice a year and you will get in touch with fellow sufferers in our private community.
- 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 RTS 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.
Quanto sopra mostra il formato. Se un pezzo non è ancora stato tradotto, si otterrà il testo/pagina in INGLESE di default. Tutti insieme teniamo aggiornato questo sito web. L'amministratore si assicurerà che il sito abbia il giusto layout, dopodiché gli utenti potranno inserire i testi nelle voci giuste.
Osservazioni generali:
- Insieme, il consiglio direttivo, i consulenti medici e gli ospiti sono responsabili della pubblicazione regolare di nuovi blog e dell'aggiornamento delle informazioni.
- Fate attenzione a scrivere in italiano corretto, correggete voi stessi gli errori invece di chiedere all'autore di correggerli.
