Join Us

By joining our Dravet community you will gain access to the comprehensive range of emotional, practical and financial support services that we provide to families affected by Dravet Syndrome.

Joining DSUK is easy and just takes a few minutes of your time. We ask you to complete an online registration form, which allows you to create a personalised profile with us. 

If you are a parent or carer you will need to have a copy of the diagnosis letter for your son or daughter, or the person that you care for, available to upload when prompted. As there are many different forms of SCN1A epilepsy, the diagnosis letter you upload, does need to specifically state Dravet Syndrome as the diagnosis, be from a healthcare professional and also include the child/adult's name and date of birth. 

Sharing these details will help us to understand your and your family’s needs better and to provide the support that you need. We will only ever use your data and your permissions for activities related to the running of DSUK, its website, fundraising activities and services. Scroll down this page for more information on how we look after your data.

At the end of the registration process you will have set up an 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

Once you have registered you will 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
• Telephone advice line (01246 912 421) to our Family Support Manager for emotional, practical and financial support, answered 10:30 - 15:30 on weekdays. If you call us outside these hours, please leave a voicemail for us to return your call.
• The option to receive our email updates on news, events and activities

How we look after your data

Who we are

On this website, “we” refers to Dravet Syndrome UK (DSUK). Please read our privacy policy 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 policy. 

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.