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

EPNS 12th European Paediatric Neurology Society (EPNS) Congress

EPNS shall be holding their 12th European Paediatric Neurology Society (EPNS) Congress in June. Professor Alexis Arzimanoglou and Professor Vincent Des Portes, together with the local organising team, invite you to attend and participate in the 12th EPNS Congress in Lyon, France which is taking place 20-24 June 2017.  

The University of Edinburgh - Survey for parents of children with epilepsy

In association with the students of University of Edinburgh we are pleased to support an ethically approved online survey running from 20th February 2017 until 27th March 2017 The survey is aimed at parents, guardians and carers regarding the use of cannabinoids to treat childhood epilepsy. This project forms part of medical training as a student selected research component and the anonymised survey is being overseen by Dr Richard Chin, Clinical Senior Lecturer in Paediatric Neurosciences and Honorary Consultant Paediatric Neurologist at the University of Edinburgh, the Royal Hospital for Sick Children, Edinburgh, and the Muir Maxwell Epilepsy Centre, Edinburgh. To find out more and partake in the survey please...

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.