23 Sep The European Epilepsy Congress Rome 2024

The European Epilepsy Congress has shown significant growth in recent editions with more than 3,000 attendees and nearly 400 speakers at the 2024 event, writes Dr. Luis Miguel Aras Portilla.

Dr. Aras Portilla is a medical doctor, a father of a Dravet girl, and, since 2021, he has held the position of Scientific Director of the Dravet Syndrome European Federation. Here is a summary of his thoughts following the Congress held this year in September, in Rome:

• The concept of Developmental and Epileptic Encephalopathy has been present in many of the nearly 130 conferences, with Dravet syndrome often chosen as a representative example.
• Dravet Syndrome is the most referenced epilepsy. According to the official program, it is mentioned 8-36 times more than other rare epilepsies.
• Notable presence and activity of pharmaceutical companies with Dravet products or lines, both in sponsorship and support of the congress, as well as in communications with results and studies on their products.
• About clinical trials:

– Stoke Therapeutics presented good results from their phase I/IIa trial and anticipated their intention to develop phase III.
– Encoded Therapeutics is very pleased with the progress of their phase I /II trial (starting recruitment).
– Takeda presented their results, which are under review for not meeting their goals.

• It is noteworthy that in specific talks about other epilepsies, especially their comorbidities, data from Dravet syndrome are often used. This is undoubtedly a sign of the work that needs to be done in many epilepsies and the good work done so far by the Dravet community.
• Gene therapies have occupied an important part of the conversations and conferences, with a significant role for the industry and their approaches, including Stoke Therapeutics and their Dravet line, but also the academic shows its interesting contribution. I remain a silent admirer of Gaia Colasante’s work.
• More than 130 sessions have been held at this congress. The words “patient,” and “their needs” continue to grow in frequency and intensity in the context of these sessions. However, the patient’s voice is still excessively channeled by third parties and not by those who live it 24 hours a day, 365 days a year. There are needs that are difficult to address and resolve if we do not invite patients to participate directly in the discussion.
• Interactions between clinicians and preclinical investigators are becoming more common, with debates as passionate as they are productive. If we can multiply them, we will undoubtedly advance.
• It is always exciting to attend presentations with new therapeutic approaches, which undoubtedly endorse our work and fill us with hope. At this congress, the industry and academia have presented several lines of great interest.

Great effort by the European Dravet Syndrome Federation and representatives of member entities to cover everything that a congress of this type offers. Without a doubt, Dravet syndrome permeates every corner of these congresses, and one of the main drivers is the Dravet patient community.
Great reception among doctors, researchers, and industry for the projects and plans that the European Dravet Syndrome Federation is developing. (photo above: The leadership of Dravet Syndrome European Federation at the 15th European Epilepsy Congress – from left to right: Serpil Budak, vicepresident, Simona Borroni, president, and Luis Miguel Aras Portilla, chief scientific officer)

Dr Aras Portilla
Luismi.aras at dravet.eu