Hadisələr
Vebinar: Mürəkkəb ünsiyyət ehtiyacı olan uşaqlar üçün yüksək texnologiyalı həllər
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…
Böyümə Zəifləmə Müalicəsi – İstədiyiniz və bilməli olduğunuz hər şey
Join us to learn more about growth attenuation therapy (GAT) - an intervention to bring on early puberty in order to reduce the ultimate growth of a child. Since 2006, this treatment has been utilized to help caregivers continue to care for non-ambulatory children with severe physical and cognitive delays in their own homes. Those…
CURE Epilepsy Webinar – SUDEP haqqında danışarkən: Nadir Epilepsiya İcmasının Ən Son Araşdırmalarla Silahlanması
DEE-P Əlaqələri və Epilepsiyada Ölümlə Mübarizə Tərəfdaşları (PAME) ilə əməkdaşlıqda Epilepsiyada Qəfil Gözlənilməz Ölüm (SUDEP) 1,2 yaşından asılı olmayaraq epilepsiya xəstəsi olan təxminən 1000 nəfərdən 1-nə təsir göstərir. Yoxluq ikən…
Vebinar: Beyin toxumasının donorluğu niyə vacibdir
Nadir epilepsiya ilə hər hansı bir sevilən birinin itkisi ağlasığmazdır. Hamımız arzulayırıq ki, bir problemlə gələn əzablara son qoymaq üçün edə biləcəyimiz daha çox şey ola bilər...
Yay Tutma Fəaliyyətinin Planlaşdırılması – Hazır olmaq üçün bilməli olduğunuz və etməli olduğunuz şeylər
"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…
Planificación SAP de Verano: Bu, hazır olmaq üçün lazım olan şeydir.
"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…
Nadir epilepsiyaları olanlarda COVID-19 peyvəndi və infeksiyaları haqqında nə öyrənirik?
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…
Məktəbə Qayıdış SAP
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,…
Oral Health and Hygiene for Those Who Do Not Eat by Mouth
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…
Keto and the DEEs
Do you have questions about the keto diet? Come to find out how the ketogenic diet works with the DEEs from Ketogenic Diet Program Director and Pediatric Epileptologist Dr. Chalongchai…
Epilepsy Surgery and Rare Genetic Disorders
Come hear about when and why you should consider epilepsy surgery for your child with a DEE. Our guests will be: Dr. Ahmad Marashly, Medical Director, Pediatric Epilepsy Surgery Program,…
Pediatric GI Issues in the DEEs
Come hear about GI issues such as reflux, feeding tubes, constipation, and more from pediatric GI doctor and KdVS dad Russ Zwiener. The discussion will be led by Kaci Fisher, a…
