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The following registration form will allow you to create a personalised profile with us. Please add all family members so that you can all benefit from the services and support we offer. You will be able to update this information at a later date, for example if your details change, such as moving house or wanting to add a new sibling.
If you are a parent or carer you will need to have a copy of the diagnosis letter for the person living with Dravet syndrome available to upload when prompted. As there are many different forms of SCN1A epilepsy, the diagnosis letter needs 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.
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.
We will only ever use your data and your permissions for activities related to the running of DSUK, its website, fundraising activities and services.
Would you like to receive birthday cards for your child(ren) by post?– Children with Dravet Syndrome receive birthday cards regardless of age.– Siblings receive birthday cards until they turn 16.
Would you like us to share your name and email with other families in your area? We only share details when: – A newly registered family consents to sharing, or– A registered family asks to connect with others nearby living with Dravet Syndrome.
Would you like to receive our occasional e-newsletter with updates on research, events, and DSUK activities?
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.
Would you like to receive occasional printed materials about DSUK’s services and ways to get involved?
You can update your preferences at any time by logging in to this account area or by emailing [email protected] with the subject UNSUBSCRIBE.
We use photos and videos of individuals with Dravet Syndrome and their families to promote our work. Do you consent to DSUK using your submitted photos/videos in the following ways? – DSUK digital communications (e.g., website, social media, newsletters, YouTube)– DSUK print materials (e.g., leaflets, banners, fundraising materials)– Partner organisations (e.g., media outlets, corporate partners, grant applications)
To register someone with Dravet Syndrome, please upload an official document (e.g. hospital letter) confirming their diagnosis, name, and date of birth. This can be from a Consultant, GP, Epilepsy Nurse, or another healthcare professional. Please ensure the document specifically states ‘Dravet Syndrome.’ If you have any questions, contact [email protected] before applying.
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 parent/carer (e.g., a spouse or partner) to your account? If so, they will receive an email invitation to create their own DSUK account and set their 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.
