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This webinar, put on in conjunction with the CACNA1A Foundation, is the fourth in our series on Optimizing Therapies for those with DEEs, and will focus on how to read and interpret your child's behaviors as communication within the home. In addition, we will spend time discussing how to shape those behaviors into meaningful forms of…

This webinar, put on in conjunction with the CACNA1A Foundation, is the fifth in our series on Optimizing Therapies for those with DEEs, and will focus on the use of high-tech AAC solutions for communication and access to the home environment.  We will look at options available for being able to access different toys, home environmental…

In partnership with DEE-P Connections and Partners Against Mortality in Epilepsy (PAME) Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age 1,2. While lack of seizure control and seizure severity are the most common concerns for increased risk of SUDEP, there is also a concern that certain genetic mutations…

The loss of any loved one with a rare epilepsy is unimaginable. We all wish there were more we could do to help end the suffering that comes with a rare epilepsy diagnosis. In this webinar, we want to tell you about one incredibly important way families can make a huge impact - brain tissue…

"Summer Seizure Action Planning - What you need to know and do to be prepared" with pediatric neurologist, Dr. Inna Hughes With Summer comes changes in routine, new caregivers, and new environments. Be prepared for seizure emergencies in all scenarios by planning ahead. Come hear from a pediatric neurologist and a rare epilepsy family about…

"Planificación SAP de verano: lo que necesita saber y hacer para estar preparado" con Dr. Rebecca Garcia-Sosa En Español! Con el verano llegan cambios en la rutina, nuevos cuidadores y nuevos entornos. Prepárese para emergencias convulsivas en todos los escenarios planificando con anticipación. ¡Venga a escuchar de un neurólogo pediátrico y una familia de epilepsia…

Are you curious about the safety of COVID-19 vaccines for those under 5 with rare epilepsies? Are you unsure about whether to get your child with a rare epilepsy vaccinated against COVID-19? Join us to hear from an incredible panel of experts and get your questions answered. Are you willing to share your experiences with…

Back to school time means it's time to update your child's seizure action plan (SAP)! Make sure that those who care for your child know how to handle seizure emergencies appropriately and in accordance with your wishes. If it isn't in the plan, it can't be done. Hear from Dr. Inna Hughes and SCN2A dad,…

Дали вашата сакана со DEE/ретка епилепсија се бори со проблеми со забите? Отечени непца Прекумерни орални секрети Мелење заби Придружете ни се за да слушнете од Стоматолошкиот хигиеничар кој е специјализиран за работа со медицински сложени деца, истражувачката и мајката со ретка епилепсија KCNT1, Шенон Дејли Веир, како и детскиот стоматолог д-р Ханс Рејнемер од Универзитетот во Јута. Овој…

Дали имате прашања во врска со кето диетата? Дојдете да дознаете како функционира кетогената диета со DEE од директорот на програмата за кетогена исхрана и педијатриски епилептолог д-р Чалонгчаи Фитсанувонг и регистрираната диететичарка Стефани Шимпф од Универзитетот во Чикаго!