There is a lot of help and advice out there to help you, and families all over the country who are in the same situation.
It’s very easy to find out bad information online, and we wouldn’t recommend reading everything you find on Google, especially just after diagnosis.
Instead, we try to provide useful and reliable overviews of various topics in our Information section.
However, probably the best place for help and advice from fellow CdCS parents is on our Facebook group. It’s full of people in the same situation as you, who are more than happy to give advice, share experiences, and provide a shoulder to lean on when things are hard.
The other main place to get information is at one of our regular events. We organise regional meetups and national weekend-long get-togethers for parents and children, where you can make friends, get advice, and learn more about how best to help your child.
It can be hard to get the courage to come along the first time, but we promise it’s worth it!
When you’re ready, have a look round the rest of the site, and please come and say hello on Facebook! We’re looking forward to meeting you!
We have families and supporters all over the country, who are often quite happy to meet up and help you through. Take a look at the map below to see if there’s anyone near you, and get in touch with firstname.lastname@example.org if you’d like an introduction.
Map shows approximate locations of CDC Support Group families and other supporters. Locations are approximate, using only the first half of each postcode for anonymity.
If you would like to get in touch with families or supporters near you, email email@example.com and we can put you in touch.
If you think you're missing from our map, email firstname.lastname@example.org with your postcode and we'll add you on!