By joining Dravet Syndrome UK, an online account will be created where you can log into. Here you will be able to manage how you stay in touch such as subscribe to email updates and Dravet newsletters, and if eligible apply for the night-time monitoring fund, adult assistance fund and annual weekend away grant, and even nominate super siblings. It will also make managing your own details much easier, especially if your circumstances change.
Once you have registered you will receive the Dravet Syndrome UK welcome pack, which includes lots of Dravet information, along with the contact details and a profile form of a sponsor family who you can contact directly.
You can also be added onto the Dravet Syndrome UK private Facebook forum. This is a private group for families of Dravet patients within the UK. It is an active group full of support and a great place to share experiences, secure in the knowledge that everyone else on the forum understands where you are coming from. Dravet syndrome can be a very isolating condition, the forum brings families together in an effort to reduce that isolation.
Click on the link below to fill in the registration form online. If you are a parent/carer you will need to have a copy of your son/daughter's diagnosis available to upload when prompted.