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articles tagged dravet

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.

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

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.

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.