Dravet Syndrome UK

We are dedicated to improving the lives of children and adults living with Dravet Syndrome, a rare epilepsy, through medical research, education and support.

[Dravet Syndrome UK @DravetUK]

Highlights from the 2024 #DravetSyndrome UK Conference. ✨

Next year's #DSUKConference will take place on November 15th/16th and will see two consecutive days aimed at both professionals and parents/carers.

Make sure to mark the date in your diary! More info to follow soon.🗓️

[Dravet Syndrome UK @DravetUK]

Register NOW for #EveryDayInMayForDravet 2025 as part of your New Year's resolutions! 🏃

We're challenging you to walk, run, swim or cycle 5km or 2km every day in May and raise vital funds and awareness for Dravet Syndrome.

Find out more ➡️https://t.co/iCcvpFjVVh

[Dravet Syndrome UK @DravetUK]

Introducing Dravet Syndrome UK's 2024 Impact Video. 💫

We are incredibly proud of our work this year, supporting almost 600 families living with #DravetSyndrome, educating professionals, raising awareness, and funding vital equipment.

Here's to 2025...💜

[Dravet Syndrome UK @DravetUK]

We're supporting the @EpilepsyInst campaign to raise awareness and advance research for the One in 100 people living with epilepsy.

So far, 211 letters have been written, reaching 134 individual MPs.

Write to your MP at https://t.co/Oo6yPy5cAl and join the campaign. 📣

[Dravet Syndrome UK @DravetUK]

Come along to the Dravet Syndrome UK Conference in November 2025 to connect with those in the #DravetSyndrome community and hear from top global experts on ground-breaking research, treatments and support available.

Stay tuned for registration details in the New Year! 💙

[Dravet Syndrome UK @DravetUK]

Introducing the last of our of six 'mini-guides' which provides information about living in the family home, supported living, home ownership, and choosing accommodation for a young person or adult living with #DravetSyndrome.

Download your copy here ➡️ https://t.co/ZrS9k3ehqI

[Dravet Syndrome UK @DravetUK]

We recently attended the AES meeting tohear the latest in #DravetSyndrome - including news from @StokeTx about the early phase results for zorevunersen- the potentially first disease-modifying therapy for Dravet.

It’s still early days, but we look forward to the progress.🔬

[Dravet Syndrome UK @DravetUK]

Introducing the fifth 'mini-guide' for families living with #DravetSyndrome.

This guide includes information about SEND support in mainstream and specialist settings, educational health and care plans, and adult learning.

Download here ➡️ https://t.co/dlGRmF81I8

[Dravet Syndrome UK @DravetUK]

A UK wide study exploring the impact on caregivers of those living with #DravetSyndrome has revealed that 90% were unable to continue working due to the sense of ‘constant struggle’ and impact on their mental well-being.

Read the full report ➡️https://t.co/E9Hn459tt5

[Dravet Syndrome UK @DravetUK]

You have until Friday 6th December to nominate a sibling for our #DSUKSiblingAwards. 🌟

If you know a sibling who is making a huge difference to the lives of their brother or sister who is living with #DravetSyndrome, nominate them here ➡️ https://t.co/NUNVXrpzn8

[Dravet Syndrome UK @DravetUK]

Today the Government has announced the launch of a new UK-wide forum to improve care and support for people affected by neurological conditions. 📣

We’re proud to support this campaign by @NeuroAlliance and look forward to seeing what progress can be made.

#BackThe1in6

[Dravet Syndrome UK @DravetUK]

We're delighted to share that Natalie, Marketing, Communications & Fundraising Manager, is expecting a baby early next year. 🍼

During this time we welcome Claudia, who brings over 5 years' experience in public relations, marketing and social media.

Welcome to the team! 🤗

[Dravet Syndrome UK @DravetUK]

Introducing our fourth 'mini-guide' for families living with #DravetSyndrome.

This guide focuses on social services, needs assessments, NHS care for children and young people, challenging local authority decisions, and more.

Download your copy here ➡️ https://t.co/euE8KtzZwI

[Dravet Syndrome UK @DravetUK]

We joined over 30 leading child and adult neurologists and neuropsychologists last week to mark a year since the launch of the SCN1A Natural History study.

Together we are making a difference to all those living with #DravetSyndrome and other SCN1A epilepsies. 💜

[Dravet Syndrome UK @DravetUK]

We're looking for corporate sponsorship for #EveryDayInMayForDravet, one of our biggest campaigns of the year, to help make the event bigger and better than ever!✨

If you know a company that may be interested, download our brochure and get in touch!

➡️ https://t.co/fKin0McxGm

[Dravet Syndrome UK @DravetUK]

We are proud to now provide the families we support access to the free online tool #AccessAva. 💻

Access Ava can help you learn more about your rights and those of your family member living with #DravetSyndrome.

To see if you're eligible, go to https://t.co/yvreK51sJV

[Dravet Syndrome UK @DravetUK]

A HUGE well done to Jorge who has raised over £3400 for DSUK in honour of his son, Theodore, who was recently diagnosed with #DravetSyndrome. 🫶

By completing the Yorkshire Marathon, Jorge and family were able to smash their original £500 fundraising target out of the park! 💜

[Dravet Syndrome UK @DravetUK]

Introducing the third of our of six 'mini-guides' for families living with Dravet Syndrome.

This guide focuses on eating, drinking, and swallowing, tube feeding, and digestion and toileting.

Download your copy here ➡️ https://t.co/XSAIY1S0Nq

#DravetAwareness #DravetSyndrome

[Dravet Syndrome UK @DravetUK]

Save the Date; the Dravet Syndrome UK Conference is back in 2025! 🗓️

Join us to hear from top global experts and find out the latest on ground-breaking research, treatments and support.

Watch this space for more details in the New Year! 👏

#DravetSyndrome #DSUKConference

[Dravet Syndrome UK @DravetUK]

Siblings make a huge difference to the lives of those living with Dravet Syndrome, which is why we celebrate their courage through our annual #DSUKSiblingAwards. 🤩

To nominate a sibling or for more details visit https://t.co/60i4R2foRM

Closing date is Friday 6th December.