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Please let us know your details and contact preferences by filling in this registration form. In doing so, you’ll be setting up an account on our log-in portal, where you’ll be able to apply for grants from DSUK in the future. Towards the end of this form, you’ll be asked to fill in details about the rest of your family so that you can all benefit from the services and support we have to offer. You can come back and update this form at a later date, for example if your details change, such as moving house or wanting to add a new sibling.
To fill in this form you will need an official document from a healthcare professional, stating your child/adult’s name, date of birth and their Dravet Syndrome diagnosis. We require this document to specifically state ‘Dravet Syndrome’ as the diagnosis. If you have any queries, please contact [email protected] before filling in this registration form.
You will also need a photograph of your family to upload (jpeg or png). This will not be shared with anyone apart from DSUK staff but enables us to more easily recognise you and your family at our events.
Our e-mailing list receives periodic e-newsletters containing updates, information on surveys and findings, research developments, news, events, campaigns and other activities related to DSUK.
Would you like to be added to our e-newsletter list?
You can unsubscribe at any time by clicking the ‘Unsubscribe’ button in the emails you receive, logging in to this account area or emailing [email protected] with the subject UNSUBSCRIBE.
You can read our Privacy Policy here.
We use Mailchimp as our email marketing platform. By selecting ‘Yes, I wish to subscribe to DSUK e-newsletters’ above, you acknowledge that your information will be transferred to Mailchimp for processing. Learn more about Mailchimp’s privacy practices.
Our postal mailing list receives occasional printed materials, including educational leaflets, information on our services, the support we provide and how you can get involved.
Would you like to be added to our postal mailing list?
You can update your preferences at any time by logging in to this account area or by emailing [email protected] with the subject UNSUBSCRIBE.
Dravet Syndrome UK produces a number of print and digital publications, including posters, leaflets, educational pamphlets, newsletters, a website and social media to support our charitable aims as registered with The Charity Commission (registration number 1128289). It is Dravet Syndrome UK’s desire to use photographs and/or video footage of children/adults with Dravet Syndrome, their siblings and other family members, in order to promote these charitable aims.
I hereby certify that I have read Dravet Syndrome UK’s photo/video release statement (see above) and willingly grant permission for all persons appearing in the photo/video footage submitted to be used in the following ways:
DSUK Digital Communications (e.g. website, social media, e-newsletters, presentations, YouTube channel) *
For each person you are registering today who lives with Dravet Syndrome we require an official document stating your child/adult’s name, date of birth and their Dravet Syndrome diagnosis. This could be from your Consultant, GP, Epilepsy Nurse or a Healthcare Professional involved in your son or daughter’s care. Please note that there are many different forms of SCN1A epilepsy, but we do need the document to specifically state Dravet Syndrome as the diagnosis. If you have any queries, please contact [email protected] before making your application.
Please upload a separate diagnosis document for each child/adult you are registering today who lives with Dravet Syndrome.
Would you like to add another adult parent/carer who is involved in your child or adult’s care (i.e. current or previous spouse or partner)?
If you select yes, after filling in some brief details about this person, an e-mail will be auto-generated to their email address, asking them to sign up for their own account with DSUK and they will be able to select their own mailing preferences.
Would you like to add details for the rest of your family so that you can all benefit from the services and support we have to offer?
If they are over the age of 18 and wish to be contacted separately an email will be sent to them directly asking them to sign up for their own account with DSUK where they will be able to select their own mailing preferences.
