IBE Epilepsy

The Global Voice of People With Epilepsy

[IBE Epilepsy @IBESocialMedia]

The GENS Policy Advocacy Report translates the voices, priorities, and lived experiences of people with epilepsy into practical recommendations for governments, healthcare leaders, researchers, advocates, and civil society organisations.

Learn more at: https://t.co/41DVaveF8I

[IBE Epilepsy @IBESocialMedia]

IBE CEO Donna Walsh presenting the Global Epilepsy Needs study at the European Federation of Neurological Associations conference this weekend.

[Parlamento MERCOSUR @PARLASUR]

💜 Parlamentarios, especialistas y organizaciones de pacientes comparten un mensaje por el Día Latinoamericano de la #Epilepsia, promoviendo una región con más información, inclusión y respeto por los derechos.
@IBESocialMedia @Fund_Hemi @LigaEpilepsia @IlaeWeb @LACEargentina

[Parlamento MERCOSUR @PARLASUR]

#PARLASUR Reflexiones de Especialistas, organizaciones de pacientes y parlamentarios en el marco de la Audiencia Pública sobre epilepsia, impulsando una agenda regional.
@GafiFuks @vikidonda @IBESocialMedia @Fund_Hemi @LigaEpilepsia @IlaeWeb

Noticia 👉https://t.co/Zai5jPoT1Z

[Parlamento MERCOSUR @PARLASUR]

#AgenciaPARLASUR El PARLASUR instituyó la Semana de Sensibilización sobre la #Epilepsia, conmemorada en la semana del 9 de septiembre.

La iniciativa promueve información, inclusión y cooperación regional para combatir el estigma y garantizar derechos.

🔗 https://t.co/jizRwzn2fZ

[IBE Epilepsy @IBESocialMedia]

A packed room for today's Forum, Time is Brain: Rapid Response to Seizure Emergencies in Everyday Non-Medical Settings at #EEC2026.

[IBE Epilepsy @IBESocialMedia]

We're attending #EEC2026 this week. Across the Congress, IBE will contribute to sessions focused on meaningful patient and public involvement, person-centred care, seizure response in everyday settings and the role of people affected by epilepsy in research and education.

[Fundación de Hemisferectomía @Fund_Hemi]

Muy felices de haber participado en esta audiencia pública celebrando la declaración del día latinoamericano de epilepsia en un diálogo multisectorial entre pacientes parlamentarios profesionales de la salud de la región @IBESocialMedia @IlaeWeb @LigaEpilepsia

[IBE Epilepsy @IBESocialMedia]

Today, @PARLASUR is hosting a public hearing on inclusion, access to healthcare and ending stigma in #epilepsy.

IBE is represented by María Marta Bertone @Fund_Hemi and Alicia Bogacz, helping build momentum towards Latin American Epilepsy Awareness Week and 9 September.

[Epilepsy Kenya @epilepsyKenya]

Epilepsy has no age limit. It can begin at any stage of life, from early childhood through senior years. Raising awareness means understanding that anyone can be affected. Let’s end the stigma and share the facts. 💜
@IBESocialMedia
#EpilepsyAwareness #HealthAwareness

[Epilepsy Kenya @epilepsyKenya]

A powerful day of training with Kajiado Chiefs!
Together with KAWE, the local administration is taking a stand to protect community health.
Stigma ends where leadership begins!
@IBESocialMedia
#EpilepsyAwareness #Leadership #SeizureFirstAid #Community #EndTheStigma

[IBE Epilepsy @IBESocialMedia]

Congratulations to IBE President Francesca Sofia on receiving the prestigious Marisa Bellisario Award.

A fitting recognition of her commitment to scientific excellence and dedication to building partnerships that create meaningful social impact.

[Cassa Depositi e Prestiti @GruppoCDP]

È con grande orgoglio che facciamo le congratulazioni a Francesca Sofia, Direttore Generale di #FondazioneCDP, che è stata insignita del #PremioMarisaBellisario, prestigioso riconoscimento per un percorso professionale tra competenza scientifica e attenzione ai contesti più fragili.

Nel ricevere il riconoscimento, Sofia ha evidenziato il valore delle collaborazioni tra mondi diversi per affrontare i cambiamenti della società: "In questi anni ho imparato che le sfide più importanti non appartengono mai a un solo settore. Sono sempre il risultato di relazioni, connessioni e responsabilità condivise. È anche per questo che il lavoro che svolgo oggi in Fondazione CDP mi appassiona profondamente: costruire ponti tra istituzioni, #ricerca, #TerzoSettore, #imprese, comunità e cittadini per generare impatto concreto e duraturo”.

Biologa molecolare specializzata in neuroscienze, Sofia ha lavorato nei campi della ricerca scientifica, salute, politiche pubbliche e innovazione sociale. Tra le esperienze più significative, la responsabilità degli investimenti in ricerca di @Fondaz_Telethon e la presidenza dell'International Bureau for Epilepsy @IBESocialMedia, organizzazione attiva in oltre 100 Paesi nella tutela delle persone con epilessia.

#dasapere: giunto alla 38ª edizione e ideato da @lellagolfo, il Premio valorizza il talento femminile attraverso le storie di donne che, con competenza e determinazione, contribuiscono a generare cambiamento nei mondi dell'impresa, delle istituzioni, della scienza, dell'informazione, della cultura e del sociale. Un'edizione particolarmente significativa, quella del 2026, che coincide con l'80° anniversario della Repubblica e del voto alle donne.

Il Presidente della Repubblica, Sergio Mattarella, ha incontrato al @Quirinale le vincitrici del Premio, accompagnate dalla Presidente della Fondazione Marisa Bellisario, Lella Golfo.

[Epilepsy Kenya @epilepsyKenya]

Epilepsy is a medical condition, not your identity. 💜 Public stigma and unpredictable hurdles can chip away at self-esteem, but you are more than a diagnosis.
@IBESocialMedia
#EpilepsyAwareness #MentalHealth

[Epilepsy Kenya @epilepsyKenya]

KAWE met with the KMTC Principal to discuss implementing the Global Action Plan (IGAP) on neurological disorders in Kenya. 🤝We followed up with an intensive training for KMTC students, equipping future healthcare workers.
@IBESocialMedia
#EpilepsyAwareness #KAWE #KMTC

[IBE Epilepsy @IBESocialMedia]

How do we close the global treatment gap for epilepsy?

It starts in the community.

If you missed the live book launch and webinar for Epilepsy and Seizures: Building Care in the Community, you can now watch the full recording.

https://t.co/XfU3yF5LDH

[IBE Epilepsy @IBESocialMedia]

Celebramos este importante paso de @PARLASUR al reconocer el Día Latinoamericano de la Epilepsia y promover acciones que apoyen la implementación del Plan de Acción Intersectorial Mundial sobre la Epilepsia y Otros Trastornos Neurológicos (IGAP) en toda la región.

[Fundación de Hemisferectomía @Fund_Hemi]

Muy contentos de que el Parlasur reconozca el día latinoamericano de la epilepsia y aconseje a los parlamentos acciones para implementación del IGAP en latam. #igap #epilepsia @IlaeWeb @IntEpilepsyDay @IBESocialMedia

[IBE Epilepsy @IBESocialMedia]

We welcome this important step by @PARLASUR in recognising Latin American #EpilepsyDay and encouraging actions to support implementation of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders across the region 💜

[Fundación de Hemisferectomía @Fund_Hemi]

Muy contentos de que el Parlasur reconozca el día latinoamericano de la epilepsia y aconseje a los parlamentos acciones para implementación del IGAP en latam. #igap #epilepsia @IlaeWeb @IntEpilepsyDay @IBESocialMedia

[IGAP Awareness @igap_awareness]

We support OneNeurology 79th World Health Assembly (#WHA79) in Geneva, the global neurology community continues to call for stronger implementation, collaboration, and accountability in addressing neurological conditions worldwide. @IBESocialMedia @MSIntFederation @AlzDisInt

[IBE Epilepsy @IBESocialMedia]

IBE CEO Donna Walsh will today launch a major new global policy advocacy report at the 78th World Health Assembly in Geneva, bringing the voices and experiences of people with epilepsy to the heart of global health policy discussions.

#WHA79 #GENS #EpilepsyAwareness

[IBE Epilepsy @IBESocialMedia]

Join us at WHA79 side event: “Delivering on Brain Health: Implementing IGAP and the Political Declaration on NCDs – OneNeurology Partnership Perspective” 🧠

📅 Friday, 22 May
⏰ 13:00–14:20 CET
📍 Geneva & Online

👉Register: https://t.co/6YIWcaEP8T