articles tagged Dravet
Dravet Syndrome UK hold landmark 10-year anniversary fundraising dinner celebrating 10 years of providing hope for families with life-limiting epilepsy. To mark this momentous occasion will be holding a fundraising dinner on Thursday the 15th March 2018 at The Ned Hotel and Club in the heart of the London to raise vital funds and awareness.
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!
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 Syndrome UK is looking for supporters and partners who can help increase awareness of Dravet Syndrome...
This Blog will be the home of future news and updates and shall cover everything from the latest medical research papers to updates on our Conference speakers...