Dravet Syndrome European Federation

29/04/2026

What do epilepsy patients and their carers really need?

14/04/2026

Global collaboration gives real hope for advancing care and support for those affected by rare epilepsies, says Simona Borroni, president of the Dravet Syndrome European Federation.
Simona was honored to participate in a global meeting of the rare epilepsy community this past weekend, in which various efforts to change the lives of patients and their caregivers were discussed.
"I would like to recognize the importance of the initiative led by International Bureau for Epilepsy aimed at developing a shared, coordinated action to strengthen the impact of the work we carry out every day in support of people living with rare epilepsies," Simona said.

25/03/2026

Tomorrow we will celebrate Purple Day, a global initiative dedicated to raising awareness about epilepsy.

We warmly encourage you to wear purple on this day as a simple yet powerful way to show your support for people living with epilepsy, including those affected by . We want to both send a strong message of solidarity, understanding and show commitment to improving awareness across our communities.

If you would like, you can also share a photo on social media to help amplify the message and inspire others to join. On March 26, we can make epilepsy more visible and better understood.

05/03/2026

The New England Journal of Medicine has published results from recent studies of the investigational medicine zorevunersen for Dravet Syndrome, the companies developing the drug said.
The data "showed substantial and durable reductions in seizures and improvements across multiple measures of cognition and behavior," it reads.
The data seems promising for the community, but it is still early in the drug development trajectory to predict how well it works across a larger group of patients until the next phases are finished.
More details and links to the article in the story posted on our website:

Stoke Therapeutics, a biotechnology company that works on a proposed treatment for Dravet Syndrome, announced the publication of first data that shows the potential for disease modification in Dravet Syndrome. The company plans to position the investigational medicine zorevunersen as potentially

28/02/2026

Yesterday, on the eve of the Rare Disease Awareness Day, the first webinar in the “Translating Science to Care” series, organized by the Dravet Syndrome European Federation, took place. The session, titled “How Artificial Intelligence Can Make a Difference in Dravet Syndrome”, was delivered by Julian Isla Gomez - member of the Committee for Orphan Medicinal Products at the European Medicines Agency, Data and AI Resource Manager at Microsoft, director of Foundation 29, a co-founder of our Federation and also a father of a Dravet child.

In a clear and accessible way, Julian demonstrated how technology – and AI in particular – can support the diagnosis and management of rare diseases, using as an example.

He presented innovative tools that can help patients and families how to better understand complex medical records, navigate and assess eligibility for clinical trials, facilitate communication with healthcare professionals about complex conditions or visualize medical data in a more accessible and meaningful way.

Some of these solutions are already being implemented in medical centers across Europe. By integrating and analyzing data from multiple sources, AI tools can extract, evaluate, and transform complex medical information into simple, understandable summaries or visual infographics.

This webinar highlighted the tremendous potential of technology to make medical documentation more transparent and to support families in managing appointments, monitoring medications and navigating daily life with Dravet Syndrome.

Yesterday's presentation was a powerful example of how translating science into practical tools can truly improve care. And that is even more important when dealing with a rare disease!

25/02/2026

🌍 As Rare Disease Day approaches, the world comes together to shine a light for the 300 million people living with a rare disease.

You can join the global chain of lights by visiting a local monument that’s lighting up or by illuminating your home to show your support.

Not sure how to take part? Visit our website (link in bio) to explore the Illuminations Toolkits and check our Event Map for landmarks near you.

👉 https://go.rarediseaseday.org/LIGHTUP

📸 Share your photos and tag them with to be part of the global movement.

25/02/2026

🔗 Register Now!
Just two days left until the first webinar in the Dravet Syndrome European Federation's series “Translating Science into Care,” where we will explore how AI can make a difference in .

Since the number of participants is limited, please register as soon as possible to secure your spot (the link is in the comments).

23/02/2026

🌍 Save the Date & Register Now!
As we get ready to mark Rare Disease Day, we invite you to register for the first webinar in the newly-launched series “Translating Science into Care.”

🔗 The number of participants is limited so be sure to secure your spot now by registering using the link in the comments.

We will explore how AI can make a difference in Dravet Syndrome, with Julian Isla Gomez, Data and AI Resource Manager at Microsoft, Foundation 29 Director, Member of the Committee for Orphan Medical Products at EMA, Father of a child with Dravet Syndrome, and also one of the founders of our Federation.

📅 Date: 27 February, 7:00 PM

16/02/2026

💜 Save the Date! A new DSEF webinar is coming soon
As we prepare to mark Rare Disease Day, we’re excited to launch a brand‑new webinar series: “Translating Science into Care.”
The first webinar will take place at the end of February and is open to all member organisations of the Dravet Syndrome European Federation.
We will explore how AI can make a difference in Dravet Syndrome, with Julian Isla Gomez, Data and AI Resource Manager at Microsoft, Foundation 29 Director, Member of the Committee for Orphan Medical Products at EMA, Father of a child with Dravet Syndrome, and also one of the founders of our Federation.
🎯 Why join?
Because turning scientific progress into real, everyday support for people living with Dravet Syndrome starts with shared understanding and collaboration.

📅 Save the date (27 February, 7:00 PM), details and registration link coming soon.
Let’s learn, connect, and move forward together.

14/02/2026

Beyond the roses and chocolates, February 14th holds a special meaning for our community. Long before he became the face of romance, St. Valentine was known as the protector of those living with epilepsy.
​Today, we celebrate love in all its forms: the romantic kind, for sure, but also the resilient, fierce love of the Dravet Syndrome community. Wishing you a day of joy, safety and connection. 💜🌹