ePAG EpiCARE

14/02/2025

💜✨ International Epilepsy Day & Valentine’s Day: A Special Connection ✨💜

Did you know that Saint Valentine is not only the patron of love but also the protector of people with epilepsy? 💜 This Valentine’s Day, let’s show love, support, and awareness for the epilepsy community!

We invite you to watch a special video featuring ePAG interviews, sharing powerful stories, insights, and the importance of advocacy.

📽️ Watch now & help us spread awareness! 💜💪

21/06/2024

During the Epicare ERN AGM, nine of our ePAG members joined the meetings in person in Barcelona!
We would like to thank the team, and all the participants for great and productive 3 days through working group meetings, AGM and ePAG meeting, and for the opportunity to share the work of ePAG patient representatives and develop plans for further actions!

06/06/2024

Last Friday, May 31st we have held the fist online meeting with patient organizations for rare and complex epilepsies!
We would like to take this opportunity to thank all the participants, and our speakers, and we hope that this is only the beginning of us connecting and growing a patient community!
Meeting summary and next steps will be shared next week!
THANK YOU! 🫂
Epicare ERN

03/06/2024

📅 Join us for a new Gene Therapy webinar this June 6th at 16:00 CEST!

📚 Episode 7: "Health technology assessment (HTA) of genetic therapies" delivered by Prof. Oriana Ciani.

🖱 Registration link: https://register.gotowebinar.com/register/8875778367621695317 and for more information on the full Gene Therapy webinar series click here: https://lnkd.in/e2P4bGa9

22/05/2024

First online meeting with patient organisations for rare and complex epilepsies 🗣🫂💻💜
We are excited to invite representatives of patient associations for rare and complex associations to the first online meeting that will be held on May 31st from 6 pm to 8 pm CET. We are looking forward to this opportunity to discuss and further develop the activities that are of interest for all rare and complex epilepsies patient community!
Please let us know if you will be available to attend by completing the survey at: https://forms.office.com/e/yEtyW42edu
Survey is open until 27th of May 2024!

We are happy to announce that ePAG EpiCARE is working on the activities dedicated to whole European patient population with rare and complex epilepsies.
Prior to continuation of all activities, we are happy to invite representatives of patient associations for rare and complex associations in Europe to the first online meeting that will be held on May 31st from 6 pm to 8 pm CET. This is a great opportunity to discuss and further develop the activities that are of interest for all rare and complex epilepsies patient community!
Please let us know if you will be available to attend by completing the survey at: https://forms.office.com/e/yEtyW42edu
Survey has some additional questions regarding the organisation of a face-to-face meeting that is planned to be held in 2025.
Thank you!
Epicare ERN

20/05/2024

25/04/2024

New Patient Journey is out 🫂👣🗣
We’d like to thank Luciana Degaetano for preparing the Patient Journey with prof. Lo Barco for the review, and SYNGAP España and SYNGAP Research Fund for their input!
You can find the Patient Journey at:https://epi-care.eu/wp-content/uploads/2024/04/Patient-Journey-SYNGAP1.pdf

06/04/2024

Great team effort in CDKL5 community! Don't miss out the paper published at:

Epilepsia Open is an open access journal publishing rigorous basic and clinical epilepsy research or critical reviews, aiming to promote advances in epilepsy research.

04/04/2024

We are happy to announce that ePAG EpiCARE is working on the activities dedicated to whole European patient population with rare and complex epilepsies.
Prior to continuation of all activities, we are happy to invite representatives of patient associations for rare and complex associations in Europe to the first online meeting that will be held on May 31st from 6 pm to 8 pm CET. This is a great opportunity to discuss and further develop the activities that are of interest for all rare and complex epilepsies patient community!
Please let us know if you will be available to attend by completing the survey at: https://forms.office.com/e/yEtyW42edu
Survey has some additional questions regarding the organisation of a face-to-face meeting that is planned to be held in 2025.
Thank you!
Epicare ERN

02/04/2024

🧩 Today, on Autism Awareness Day, let's shine a light on the intricate connections between autism and rare, complex epilepsies. 🌟

Did you know that autism is often found as one of the comorbidities in individuals with rare and complex epilepsies? 💡 This intersection presents a unique set of challenges and triumphs for those navigating these intertwined conditions, along with their families and caregivers. 💙

Autism isn't always a singular experience—it intertwines with various conditions, including rare epilepsies, creating unique journeys for those affected. This intersection underscores the importance of holistic support and understanding within our communities. 🤝

For individuals navigating both autism and rare epilepsies, each day brings its own set of challenges and victories, highlighting the resilience and strength within them. 🌈 Today, let's come together to celebrate their unique journeys and to advocate for greater awareness and support. 💖