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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

2017 Research Grant Announced

We are very excited to announce 2017 continued funding for the updated research application received from Professor Sameer M Zuberi, Consultant Paediatric Neurologist at Royal Hospital for Children, Glasgow & University of Glasgow School of Medicine. Professor Zuberi sits on our Professional Advisory Board. The Genetic Epilepsy service based at the Royal Hospital for Children in Glasgow has been at the forefront of diagnostic services, management and research in Dravet syndrome for the last decade. As one of the world’s principal testing centres for SCN1A related epilepsies allied to an active research group, they have a unique opportunity for clinical research and collaborations with scientists worldwide.

Back to the Forest - Center Parcs Update 2017

Next month sees us heading to our Annual Weekend Away at Center Parcs, Sherwood Forest on 19th-22nd May 2017. With only a short time to go, we are busy making final arrangements for what we are certain will be another fun packed weekend! To help you plan your weekend at Center Parcs we wanted to share our updated plans for the weekend. On Friday 19th May we shall be holding a Family gathering at The Sport’s Cafe, from 17:30-20:30. Our team will be in the sports bar to welcome families so please feel free to pop by and say hello, with food and drinks available to purchase. It is a great opportunity for families to meet and get together early in the weekend. No area has been reserved BUT as always you can spot and follow the Dravet butterfly on t-shirts and bags!

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.