By joining our Dravet community you will gain access to the comprehensive range of emotional, practical and financial support services we provide to families affected by Dravet Syndrome.
The registration form below will allow you to create a personalised profile which will help us better understand you and your family’s needs so we can give you the support you need.
Once your registration has been approved, you will get confirmation of your account where you can:
- Apply for one of our financial grants (if eligible)
- Manage and update your information
- Choose how you would like to be contacted by us
You will also receive:
- Our welcome pack by post, which includes a wealth of information on Dravet Syndrome
- Details of another Dravet family, whom you can contact if you wish
- The option to be added to our private discussion forum on Facebook. This is a closed group for UK-based families living with Dravet Syndrome. It is a very active and supportive environment, where you can share thoughts, feelings and questions with people going through similar experiences to you, secure in the knowledge that everyone understands where you are coming from
- Access to telephone advice line (01246 912 421) to our Family Support Team for emotional, practical and financial support, answered 10:30 – 15:30 on weekdays. Outside these hours, you can leave a voicemail for us to return your call.
- The option to receive our email updates on news, events and activities
We will only ever use your data and your permissions for activities related to the running of DSUK, its website, fundraising activities and services. Please see below more information on how we look after your data.
Join our Dravet Syndrome UK Community
Every Family Counts
Support for Families Overseas
Dravet Syndrome UK is a UK-based charity and as such we are only able to support families based in England, Wales, Scotland and Northern Ireland. If you are a family residing outside of the UK and you are looking for information on how to get a diagnosis, availability of treatments and other support local to your country, then click here for local organisations that may be able to help you.
How we look after your data
Who we are
On this website, “we” refers to Dravet Syndrome UK (DSUK). Please read our privacy notice and cookies notice for full details.
What we will do with your data
We will only ever use your data and your permissions for activities related to the running of DSUK, its website, fundraising activities and services. You will be asked to choose how you would like us to keep in contact with you and for what reasons. If, when choosing your contact preferences, you haven’t selected any contact options, we will only contact you with matters relating to your registered account on dravet.org.uk. We may also share your information with third parties which we engage to help run our charity.
We will keep your data only for as long as we need it or for as long as we are required to do so by law, and will ensure that anyone with whom we need to share your information does likewise. We will make sure we protect your information and store it securely, and that the third parties with whom we work do the same.
What we will not do with your data
We will never pass on your data to any third parties who are not involved in running DSUK, nor permit the third parties with whom we work to do the same.
Your rights
You can change these permissions at any time. Just log in to dravet.org.uk and update your preferences. For a full list of your rights and what we do with your data please visit our updated privacy notice.
Data accuracy
We are committed to ensuring all data held is up to date and accurate. For this reason we will contact you regularly to ask if any updates are required. Your assistance with this routine check is much appreciated.