DISCUSS Survey – results

DISCUSS Survey – results

UPDATE: The published article: Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey On Dravet Syndrome Awareness Day 2016, the DSEF launched the DISCUSS survey to understand families who care for a son or daughter with Read more

Survey on falls in epilepsy

Survey on falls in epilepsy

UPDATE: The preliminary data on the incidence of falls in epilepsy is presented here. The data aims to encourage study on the new systems of protection. If you have not yet completed the survey we would like to invite you to Read more

SUDEP

SUDEP

Dravet Syndrome is characterised by high epilepsy-related premature mortality and a marked young age at death. Sudden Unexpected Death in Epilepsy (SUDEP) is the leading reported cause of death in Dravet syndrome, accounting for nearly half of all deaths[1]. DSEF Read more

Gait impairment

Gait impairment

One of the characteristics of Dravet syndrome is the progressive impairment of gait and consequently reduced functional mobility of patients. On the long term, most patients maintain the ability to walk, but for longer distances they must rely on wheel-chair Read more


Future Age H2020

Future Age H2020

The scientific study Future Age H2020 designs and develops a personal protection system based on an air bag, which can give an effective response to the consequences of tumbles. Future Age H2020 will act protecting the most sensitive parts of Read more

DISCUSS Dravet

DISCUSS Dravet

On the occasion of Dravet Awareness Day 2016 (June 23) we launched DISCUSS Dravet – a survey for the caregivers of patients with Dravet Syndrome. PARTICIPANTS: All the family/caregivers of patients with Dravet Syndrome ACTIVITY: Discover the impact of Dravet Syndrome on the family through a Read more

Dravet parent survey on antiepileptic drugs

Dravet parent survey on antiepileptic drugs

Families of patients with Dravet syndrome joined forces to carry out one of the largest scientific survey ever published for this rare disease.  In an unprecedented study, the Dravet Syndrome Foundation Spain surveyed 274 families from across Europe. One of the most important findings in Read more