New educational materials for caregivers and professionals

What to expect after the diagnosis, which is the patient’s journey, as well as basic information for healthcare professionals are all very much needed materials for everyone touched by Dravet Syndrome.


With the great help of EpiCARE, the European Reference Network bringing together healthcare providers across Europe to tackle complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources, such materials are now available and ready to be spread around.


Dravet Syndrome patient’s journey (can be downloaded by here) describes the specific needs and goals from the first symptoms to the moment of diagnosis, the health-care pathway, and then provides a long term perspective for those touched by this rare disease.


This project was possible thanks to our dutiful patient advocates Isabella Brambilla, Myra de Groot, Simona Borroni, Galia Wilson and Julian Isla.


Moreover, two very useful posters have also been published together with the European professional network: Information for Healthcare Professionals to be found here and 10 FAQ’s: Patient and Caregiver Leaflet to be found here.


The first one offers an overview of the disease, data on its incidence and prevalence, the age of onset, most frequent types of seizures, comorbidities, while also underlining the need for individualised emergency protocols.


The material addressed to caregivers puts together all the information needed when a family starts its journey with Dravet Syndrome, presented under an extremely easy to read format – the 10 most frequently asked questions, along with their answers.


Please pass these materials along to all families newly diagnosed as well as to the healthcare professionals you interact with.

Children with Dravet Syndrome do not outgrow this condition and it affects every aspect of their daily lives.