This video was created by the EpiCARE Patient Working Group. They include information about a diagnosis, seizures, statistics, an exciting bit about genetics, and overall similarities between the epilepsies – with a couple of interesting facts about the rare ones (from 2 minutes onwards).
They touch on the following rare epilepsies:
– Lennox Gastaut Syndrome (LGS)
– Alternating Hemiplegia of Childhood (AHC)
– Dravet syndrome
And also include a bit about Sudden Unexpected Death in EPilepsy (SUDEP).
The EpiCARE Patient Working Group which is made up of ePAG (European Patient Advocacy Group) Patient Advocates – who are either leaders in rare and complex epilepsy patient organisations from across Europe, or patients themselves.
This group enables representatives to work together on common issues: they are the voice of patients, produce deliverables and are involved in all EpiCARE activities.Learn some basic facts about epilepsy, seizures, and of course, indeed, the rare epilepsies!
Contact them for more information – whether you be a patient, carer, epileptologist, or just a person interested in learning more about the rare epilepsies! firstname.lastname@example.org
Check out their website: https://epi-care.eu/contact-us/
Follow us on: