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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

OPKO to commence clinical trial of (CUR-1916) Oligonucleotide to treat genetic neurological disorder

OPKO Health, Inc. has received notification from the European Commission for an orphan medicinal product (CUR-1916) under EC Regulation for the treatment of Dravet Syndrome. Orphan Designation Is given to medicines intended to treat, prevent or diagnose life threatening and debilitating diseases, with a prevalence no greater than five in 10,000 in the EU, and for which no satisfactory method of treatment, prevention or diagnosis exists, and the proposed medicine offers significant medical benefit to those with the condition. OPKO has stated its intention to commence clinical trials this year.

Dravet European Foundation presented with EURORDIS Award

We would like to congratulate DSEF (Dravet Syndrome European Foundation) on the EURORDIS Award 2017! The EURORDIS Awards recognise outstanding commitment and achievements of patient organisations, volunteers, companies, scientists, media and policymakers who have contributed to reducing the impact of rare diseases on people’s lives. Dravet Syndrome UK is a member of the DSEF, a co-operative of charities working to fund and raise awareness of Dravet syndrome across Europe.

CPD points awarded by RCPCH for Dravet Syndrome Professional Conference 2017

As our Biennial Conference 2017, Liverpool approaches in November we are delighted that RCPCH has again approved this activity for CPD in accordance with the current RCPCH CPD Guidelines for those partaking in Professional Day on Friday 17th November.

Zogenix Launch Recruitment website for continued ZX008 Trials in Dravet syndrome

If your son or daughter have been diagnosed with Dravet syndrome and is still suffering uncontrolled seizures despite current medication then you may be interested in FAiRE (Fenfluramine Assessment in Rare Epilepsy). FAiRE is a programme of clinical studies that will ask if an investigational medication called ZX008 can improve seizure control in children and young adults with Dravet syndrome.

Dravet Seeks Supporters and Partners

Dravet Syndrome UK is looking for supporters and partners who can help increase awareness of Dravet Syndrome...