Dravet Syndrome European Federation

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Dravet Syndrome European Federation

DSEF is dedicated to finding a cure for Dravet Syndrome through funding research and to save lives by increasing awareness and early detection.

06/07/2026

On 23 June, many of you joined us to raise awareness for Dravet Syndrome and to celebrate a milestone - the acceptance of our QoL4DRAVET study for publication. 💜

Now, the full article is published in Epilepsy & Behavior, and it confirms what so many of you already know:
Dravet Syndrome is a lifelong burden.

The challenges don’t end with childhood - they continue through adolescence and adulthood, shaping daily life for both patients and caregivers.

The study shows how deeply caregiving affects emotional well-being, sleep, autonomy, and social life.
It also highlights differences across Europe and reminds us that support must be long-term and inclusive, and that's exactly what we set out to do - at the Dravet Syndrome European Federation, we focus on quality of life, for both patients and their caregivers.

This research is part of that mission, and we are deeply grateful to every family who took part.
🎤 Your voices matter. Your experiences guide change. 💪

We also extend our gratitude to the team of researchers that helped us gather and then process the data!

03/07/2026

📣 Big updates from the Dravet Syndrome European Federation! 📣

Earlier this week, we held our Ordinary General Meeting, and it was a very special one, because we are now stepping into a brand new chapter for our organization.

We are thrilled to announce a powerful passing of the torch and the election of new Board members, who are ready to drive our mission forward with big plans for the future! 🚀

❤️ But first, let’s take a moment to express our heartfelt thanks to our outgoing Board members for their incredible dedication! A special, massive thank you goes to Simona Borroni, co-founder and long-serving President of DSEF. Her leadership, hard work, and invaluable contributions have truly shaped our community. We also send a warm thank you to Serpil (Pili) Budak and Sara Prates for their outstanding expertise and support. You will all be greatly missed on the Board!

🌟 Looking ahead: Meet our new leadership team!

👤 Pim Smits - Chairperson
👤 Mariola Lesiak-Bzdak - Deputy Chairperson (thank you for continuing to provide continuity!)
👤 Kenneth Sivertsen - Treasurer
👤 Francesca Michel - Secretary
👤 Vera Linden-Dey - Board Member

After the formal ratification of our new Strategic Plan (more details coming soon!), this team is ready to step up, strengthen our Federation, and support the Dravet community to advance our shared mission.

23/06/2026

23 June - Help us spread the word about Dravet Syndrome

23/06/2026

On the occasion of Dravet Syndrome Awareness Day, we are proud to share an important milestone for our community.

📂 Our paper, “Living with Dravet Syndrome: Quality of Life and Caregiver Burden Among Family Caregivers in Europe – Results from the QoL4DRAVET Study,” has been accepted for publication in the respected international journal Epilepsy & Behavior.

This study exists because families across Europe took the time to share their experiences, realities, and, above all, their challenges. We are deeply grateful for every response. Your voices help research and could shape a better understanding and better care for people living with Dravet.

On 23 June, as we raise awareness for Dravet Syndrome, we also recognise the ongoing challenges families face every day.

The publication of DSEF’s study is a step forward, and it belongs to all of you. 💜

23/06/2026

Today is the day of the Dravet community.
23 June is Dravet Syndrome Awareness Day, a moment for our global family to stand together. 🌍💜

Across countries and languages, no one should face Dravet Syndrome alone. We raise awareness for Dravet and other rare epilepsies because understanding brings connection, and connection brings strength.

Our community is growing, our voice is louder, and yet many challenges remain: in diagnosis, care, research, and everyday life.

But today, we choose visibility. We choose solidarity. We choose each other.💜

21/06/2026

On 23 June, our community comes together for Dravet Syndrome Awareness Day, across countries, languages, and time zones. 🌍💜

It's a day that belongs to all of us: families, friends, clinicians, researchers, and everyone who stands beside people living with Dravet Syndrome.

To mark this day, we wanted to do something simple but meaningful, something that can travel across borders just as quickly as support does. We created 15 banner versions in 15 languages, because sometimes awareness grows stronger when it speaks your language. ✨

We invite you to find the banner in your language and share it with your friends, your community, your followers, with anyone who should know a little more about Dravet Syndrome. Every share helps someone feel less alone. Every post helps another family be seen.

Whether you are in Spain, Germany, China, Portugal, Italy, Chile, Greece, Japan, Poland, or anywhere else in the world, help us spread the word about Dravet Syndrome!

💜 Choose your language.
💜 Share it.
💜 Help us make Dravet visible - everywhere!

(later edit: now, there's 16 banners, as we have also included an Arabic language version)

19/06/2026

A mutation can change a life, but understanding it can change the future. 🧬

As we are getting close to the Dravet Syndrome Awareness Day on 23 June, we continue to learn, share and stand together. 💜
Last week we hosted another session in our “Translating Science into Care” webinar series. This time, Prof. Victor Puntes joined us for a talk titled “Insights into Dravet Patients from the Lab and the Bedside” - and it turned out to be one of those sessions that stays with you.

What made it special was not just the science, but the person delivering it. Prof. Puntes is both a researcher and the father of a daughter living with Dravet Syndrome, and that combination shaped everything he shared. He moved naturally between scientific explanations and everyday experience, in a way that felt very familiar to many parents listening.

One of the ideas that struck a chord was his way of explaining the SCN1A mutation. He compared it to an error in a musical score: the notes themselves are written differently, so the music will sound different no matter how well you play it. It’s a simple image, but it helps shift the perspective - people with Dravet Syndrome are not “malfunctioning”; they are following the instructions they were given. The challenge lies in the score, not in the musician. 🎵

He also spoke about something many families recognised immediately: in his home, the point of reference isn’t a “typically functioning” person, but a happy person with Dravet Syndrome. While discussing genetics, seizure mechanisms, epilepsy and emerging therapies, he kept returning to real life: development, communication, treatment choices, and the small moments that shape a family’s day.

🔬 His personal stories brought the science to life and reminded us why research matters in the first place: because it touches real people, real families, real futures.

The webinar truly lived up to its title, offering insights from both the lab and the bedside. Bridging science with lived experience is exactly what our community needs!

16/06/2026

Dear Friends from around the World,

As International Dravet Syndrome Awareness Day is just one week away, we are pleased to share this year’s official campaign visual with you.

The Dravet Syndrome European Federation brings together patient organizations, families, healthcare professionals, researchers, and advocates from across Europe, but our community is truly global. We are all united by a shared goal: to improve the lives of people living with , by raising awareness, supporting research, improving access to high-quality care, and ensuring that the voices of patients and caregivers are heard.

This year’s visual, designed by one of our member associations, Stowarzyszenie DRAVET.pl, proudly features 33 member logos, representing patient advocates, families, and organizations from around the world. What an incredible achievement – truly “rare for rare”! We are also pleased to share that we have 15 language versions of the poster, reflecting the international strength and diversity of our community.

We warmly invite all of you to help us share this unified campaign visual and amplify our message across your networks in the days leading up to June 23. Together, we can show the strength, solidarity, and impact of the global Dravet Syndrome community.

Let's start the countdown to Dravet Syndrome Awareness Day! 💜

11/06/2026

🗓️Today is the day. Register now for a chance to hear Professor Victor Puntes sharing insights from both the scientific lab and his personal experience caring for a Dravet child.
Our webinar starts at 8 PM CEST (you will receive the link to attend the session after registration in the form shared below). Don't miss it!

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149 Rue De Sèvres
Paris
75015

Site Web

http://www.dravet.eu/

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