Acara

Webinar iki, digabungake karo Yayasan CACNA1A, minangka sing kaping lima ing seri babagan Optimizing Therapies kanggo wong sing duwe DEE, lan bakal fokus ing panggunaan solusi AAC berteknologi tinggi kanggo komunikasi lan akses menyang lingkungan omah. Kita bakal ndeleng pilihan sing kasedhiya kanggo bisa ngakses macem-macem dolanan, lingkungan omah…

Ing kemitraan karo DEE-P Connections and Partners Against Mortality in Epilepsy (PAME) Sudden Unexpected Death in Epilepsy (SUDEP) nyebabake kira-kira 1 saka 1,000 wong sing nandhang epilepsi, tanpa umur 1,2 taun. Mumpung kekurangan…

Kelangan wong sing ditresnani kanthi epilepsi langka ora bisa dibayangake. Kita kabeh pengin luwih akeh sing bisa kita lakoni kanggo mungkasi kasangsaran sing kedadeyan karo diagnosis epilepsi sing langka. Ing webinar iki, kita pengin menehi pitutur marang kowe babagan cara sing luar biasa penting kanggo kulawarga bisa nggawe pengaruh gedhe - jaringan otak…

"Perencanaan Tindakan Penyitaan Musim Panas - Apa sampeyan kudu ngerti lan nindakake supaya bisa disiapake" karo ahli saraf pediatrik, Dr. Inna Hughes Kanthi Musim Panas, owah-owahan rutinitas, pengasuh anyar, lan lingkungan anyar. Disiapake kanggo kahanan darurat penyitaan ing kabeh skenario kanthi ngrancang luwih dhisik. Ayo ngrungokake saka ahli saraf pediatrik lan kulawarga epilepsi sing langka babagan ...

"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,…

Does your loved one with a DEE/rare epilepsy struggle with dental issues? Swollen gumsExcessive oral secretionsTooth grinding Join us to hear from Dental Hygienist who specializes in working with medically complex children, researcher and KCNT1 rare epilepsy mom, Shannon Daly Weir as well as Pediatric Dentist Dr. Hans Reinemer from the University of Utah. This…

Apa sampeyan duwe pitakonan babagan diet keto? Teka kanggo mangerteni carane diet ketogenik bisa dianggo karo DEE saka Direktur Program Diet Ketogenik lan Epileptologist Anak Dr. Chalongchai Phitsanuwong lan ahli diet Stephanie Schimpf saka Universitas Chicago!

Ayo ngrungokake babagan masalah GI kayata refluks, tabung panganan, konstipasi, lan liya-liyane saka dokter GI pediatrik lan bapak KdVS Russ Zwiener. Diskusi kasebut bakal dipimpin dening Kaci Fisher, anggota Dewan Yayasan Sindrom Koolen-de Vries lan ibu KdVS.