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Blog

Welcome to the Dravet Syndrome UK Blog.

This is the hub for our communications and will be frequently updated with relevant articles of interest, newsletter releases, important updates, details of upcoming events and much more so check in whenever you can.

If you would like to feature in the Blog with your case study, event photos or feedback on Dravet syndrome of any kind please email your idea to gary.j@dravet.org.uk

Living with Dravet Syndrome - Charlotte's Story

We understand that living with Dravet syndrome is tough. Quite often, despite others making tremendous attempts to help and understand, only those living with the this catastrophic condition will ever truly grasp its full impact.  Our charity is founded on the principle of supporting and connecting families. For this reason we provide a broad range of incentives including a dedicated and private online forum, grants for monitors and also a 16+ Adult Assistance grant to support Dravet children and parents as they make the transition into adulthood.  We spoke to Julie Turner who is a single parent to Charlotte, aged 19 and living with Dravet syndrome, about her experience.

Support International Dravet Day 2017

Friday 23rd June is world International Dravet Awareness Day! Help us raise awareness by downloading and displaying our poster.

Charity Golf Day - Arkley Golf Club

A charity golf day was held on 9 June at Arkley Golf Club in Barnet, Hertfordshire, which was a huge success! The day had hoped to raise £5,000 which was to be split between Dravet Syndrome UK and Jacob's Dreams but the figure far exceeded the target and it now stands at £6,500.

Latest medical trials resulted in a greater reduction in convulsive-seizure frequency than placebo

We are very encouraged by the latest medical trial results from GW Pharmaceuticals of the application of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome.

Bank Holiday Fundraising Extravaganza

We hope you all thoroughly enjoyed the Bank Holiday weekend! What a weekend it was for our superstar fundraisers up and down the country with a number of organised events taking place all over the UK - from Hackney to the Cairngorms you could be sure to spot a Dravet t-shirt!  Read the full blog post for a full update of this weekends events for Dravet Syndrome UK