If you’ve just received a diagnosis of r(20) syndrome for yourself or your child we understand that this can be a worrying time for you, as you come to terms with this news. Don’t worry, that’s why we are here to help you!
Some people receive a diagnosis within a short amount of time after their seizures start, but for the majority of individuals they will have been living with their symptoms for a number of years. This doesn’t make finding out that you have r(20) syndrome any easier, because in all cases there is very limited information available to your medical team – in fact, you may be the first case of r(20) that they have treated in their medical career.
Download our Welcome Packs
We have two downloadable Welcome Sheets to get you started on how to stay up-to-date with all that’s going on at Ring20 and how to connect with other r(20) families and join the conversation – when you’re ready, of course!
Some r(20) facts and figures
Ring20 - here to help!
Whilst there is a lot we do not yet know about r(20) syndrome, it’s causes and how to treat people, do not despair. There is a lot we can do and are doing to support you and families like you…
When you are ready, checkout out the following pages on our website: