19 Gen Federazione Italiana Epilessie (FIE)
Federazione Italiana Epilessie (FIE)
The Italian umbrella organization for people living with epilepsy
Twenty-two local organizations focused on epilepsy or epilepsy-associated diseases are gathered in the FIE confederation.
Since 2006, this umbrella organization has been advocating for people with epilepsy, a condition still associated with a very strong social stigma.
FIE works to raise awareness on the disease and to foster the development of appropri-ate social- and health-care tools to allow people with epilepsy to live to the fullest and achieve social integration.
Medicine is still not providing adequate tools to guarantee a good management of epilepsy; the chronic therapy for this disease entails severe side effects and many patients are resistant to the drugs currently out there.
The estimate for the drug-resistance phenomenon is around 125.000 people, just in Italy.
This fact led FIE, year after year, to think deeply about its mission and the urgency to deal with a strong unmet medical need like that pertaining the development of novel therapies for epilepsy.
In 2014 FIE representatives came in contact with Francesca Sofia who was, at the time, going through the process of founding Science Compass.
A meaningful conversation developed among them, as a result of a strong common focus towards the improvement of treatment options for epilepsy.
In fact, when this encounter took place, Francesca Sofia had been going through a few years of deep research on this topic, being the mother of a child with epilepsy herself.
Working with FIE, Science Compass performed an accurate scenario analysis of the research field; this was done stocktaking relevant literature and scientific events in the field and integrating this analysis by establishing a direct dialogue with opinion leaders.
Mapping of the scientific context was complemented by an exchange with major funders in the epilepsy field in Europe and the US and the appointment of an international advisory board to devise a strategy for development.
The first phase of the resulting strategic plan deals systematically with unraveling the causes of the disease by use of next generation genomics.
It is, in fact, estimated that more than 50% of patients are lacking an accurate molecular diagnosis.
After building, through the work of Science Compass, a knowledge base on Italian clinical centres and their level of technical and scientific expertise in epilepsy, FIE selected four centres and put those in charge of launching a project to obtain the molecular diagnosis of 150 children affected by severe forms of epilepsy.
Bridging this gap is a crucial step to advance the quality of treatment options for epilepsy.