Isabella Brambilla is the mother of three children whose the youngest is affected by Dravet Syndrome, a rare
form of drug-resistant epilepsy.
She founded Dravet Italia Onlus1 in 2010 to support research and to improve the patient's quality of life. With a
Scientific Committee establishing the “National Register of Dravet Syndrome and other Syndromes related to
mutation of the gene SCN1A and PCDH19”2 now being developed at European level2.
She also promoted other surveys at international level (Falls with Epilepsy, Vaccination, Emergency Protocol,
Covid19 all for DS).
She is working to update Dravet Diary App (iOS, Android and web) easy-to-use family tool to manage DS patient's activities, appointments, medical examinations, and seizures.
In 2013, she has contributed to the co-foundation the Dravet Syndrome European Federation of which she was
first deputy and then chair until 20203.
She organized "Horizons for Dravet Syndrome"4 meetings on Dravet's Syndrome and has contributed to several
scientific publications.
She is a Coordinator ePAG in ERN EpiCARE5 and member of Steering Committee sins 2017.
In February 2019, she become part of the new group “ePAG-Italia”6.
In 2020 she has contributed to the co-foundation the European KCNQ2 Association7
In 2021 she has contributed to foundation the Rare and Complex Epilepsies Alliance.