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@ilae_epilepsy Congress has been great opportunity to meet other support organisations. Our neighbours SynGAP Research Fund (SRF) are a support organisation for Syngap1, a severe genetic epilpesy which presents with frequent short seizures, often absence seizures, from age 3 onwards.

📣 #MedSafetyWeek starts today! You can help us make medicines safer for everyone and improve #PatientSafety worldwide. Please report any suspected side effects from medicines 👉hpra.ie/report #ReportSideEffects

November is Epilepsy Awareness Month. There are many different types of epilepsies. At Dravet Syndrome Ireland we support families affected by rare genetic epilepsies. These conditions affect all aspects of life and are much more than seizures. #rare epilepsies #dravetsyndrome

Today is Rare Disease Day. #Strongertogether Dravet Syndrome is a rare form of drug resistant epilepsy with seizures beginning in the first year of life. Our community affected by rare genetic epilepsies is small but together with the larger Rare community our voices are many.

We are excited to host our 2024 Symposium for Parents and Caregivers on 25th May. Now open for bookings eventbrite.com/e/dravet-syndr…

We are very excited to host our 2024 Symposium for parents and caregivers on 25th May. It is now open for bookings eventbrite.com/e/dravet-syndr…

We're asking everyone to sign this open letter - tell Europe 🇪🇺 that we want joined up thinking across Europe to help address the needs of people living with rare diseases Stephen Donnelly Department of Health Billy Kelleher MEP Pádraig O'Sullivan TD RARE Ireland Rare Disease Clinical Trial Network, Ireland

Fantastic day at our Symposium for parents and caregivers on Saturday. Great to have so many of our colleagues from FutureNeuro Centre attend. In particular thank you to our guest speakers Dr Susan Byrne, Prof Norman Delanty and Orla O'Connor

Great to meet with so many parents, caregivers and FutureNeuro Centre researchers at our recent Symposium. We had a great day of talks and discussion. Full details and photo gallery from the event is now on our website. Thanks to UCB US for supporting the event

Thanks to Phoenix FM (we're on 🦋) for the opportunity to raise awareness for Dravet Syndrome Awareness Day on 23rd June

Thanks to Phoenix FM (we're on 🦋) for having our chairperson Nicola Kehoe on your show this morning to raise awareness. Listen to the interview starting at 53min into the show mixcloud.com/925PhoenixFM/d…

🌟On #DravetAwarenessDay, we’re spotlighting Dravet Syndrome Ireland’s 2024 Symposium for parents and caregivers. Events like this are vital for sharing the latest research and fostering community connections👨‍👩‍👧‍👦 Learn more about our researchers' experience: futureneurocentre.ie/dravet-syndrom…

Today is international #DravetSyndromeAwarenessDay We are proud to be part of the international community raising awareness and supporting families affected by Dravet Syndrome #strongertogether Fundación Síndrome de Dravet Dravet Syndrome UK Dravet Syndrome Foundation Spain DRAVET.CH ApoyoDravet

We made a patient organisation submission to NCPE today in support of reimbursement of Fenfluramine for the treatment of Lennox Gastaut Syndrome. Our submission for Dravet Syndrome was completed at end of July. We look forward to a positive outcome from NCPE and HSE

Looking forward to our family fun day on 10th November. Open to all families with a child or adult with a complex genetic epilepsy. Booking on eventbrite

Thank yo FutureNeuro Centre for inviting our chairperson Nicola Kehoe to join the expert panel session at yesterday's Clinical Conference - Gene Therapy For Neurological Conditions in Ireland. Fantastic to be part of the discussion on opportunities and challenges for gene therapy

This #InternationalEpilepsyDay we are shining a light on rare genetic epilepsies

Fantastic to have the launch of the DS time study by Cristina R. Reschke and her team at FutureNeuro Centre at our Annual Symposium today. Also really interesting talks so far by Prof Andrea Brunklaus and Dr David Lewis Smith

We are delighted to launch our new logo and branding, incorporating a DNA strand to reflect our community affected by rare genetic epilepsies. At Dravet Syndrome Ireland we support families living with many forms of rare genetic epilepsies.