On Saturday 12th April, our colleagues in Dravet Syndrome Ireland will be hosting their annual Symposium for parents and caregivers.
Dravet Syndrome (DS) is a severe type of epilepsy characterised by often prolonged (5+ minute) seizures that usually begin in the first year of life. It affects one in 20,000 – 40,000 people worldwide. It is a genetic condition, often caused by SCN1A gene mutations, most of which are de novo.
Epilepsy Ireland work closely with Dravet Syndrome Ireland on several shared goals and through our services, support many people living with Dravet, as well as their families. We were delighted to be invited by our colleagues in Dravet Syndrome Ireland to host an Information stand at the event, where we will be sharing information about our supports and services to all those in attendance.
The full agenda for the Dravet Syndrome Ireland Synposium is outlined below, featuring a range of fantastic speakers and experts.
- 10:00am - Registration
- 10:30am - Opening and Welcome
- 10:45am - An update on new treatments and clinical trials for genetic therapies with Prof Andreas Brunklaus
- 11:30am - Sleep study in Dravet Syndrome with Dr. Susan Byrne & Dr. Cristina Ruedell Reschke
- 12:00pm - Speed dating; meet the researchers from FutureNeuro
- 12:45pm - Lunch
- 2:00pm - Genetic epilepsies in adulthood with Dr. David Lewis Smith
- 2:50pm - Fenfluramine; An Irish Perspective with Prof Bryan Lynch
- 3:30pm - Close
We look forward to attending the event on the day and meeting more families supporting loved ones living with Dravet. We wish our colleagues in Dravet Syndrome Ireland well with the final preparations for their annual symposium!
WHO?
This event is for families supporting loved ones living with Dravet Syndrome and other rare genetic epilepsies
WHEN?
Saturday, April 12th, 10:00am - 3:30pm
WHERE?
Castleknock Hotel, Dublin, Dublin 15 (D15 WNR7)
REGISTRATION
To register for this event, you can do so by visiting Dravet Syndrome Ireland's Eventbrite page via the button below
If you have any questions regarding this event, you can contact Dravet Syndrome Ireland by emailing info@dravetsyndromeireland.org.
FURTHER INFORMATION
- You can learn more information about Dravet Syndrome Ireland by visiting the website of our colleagues in Dravet Syndrome Ireland.
- Further information on Dravet Syndrome and other genetic epilepsies can be found by visiting the 'Rare Epilepsy Disorders' page on our website.
- If you need any information or support regarding epilepsy, contact your local Community Resource Officer - you can find their details by visiting the 'Our Local Service' section of our website.