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  • 網路研討會：針對具有複雜溝通需求的兒童的低科技解決方案

    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…

  • 網路研討會：針對具有複雜溝通需求的兒童的高科技解決方案

    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…

  • Growth Attenuation Therapy – Everything you want and need to know

    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 癲癇網路研討會 – 談論 SUDEP：用最新研究武裝罕見癲癇社區

    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…

  • Webinar: Why Brain Tissue Donation Matters

    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

    "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…

  • SAP de verano 規劃：需要做好準備

    "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…

  • 回到學校 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…

  • 不經口進食者的口腔健康與衛生

    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…

  • Keto 和 DEE

    您對生酮飲食有疑問嗎？來聽聽生酮飲食計畫總監兼小兒癲癇學家 Chalongchai Phitsanuwong 博士和芝加哥大學註冊營養師 Stephanie Schimpf 的指導，了解生酮飲食如何與 DEE 相結合！

  • 癲癇手術與罕見遺傳性疾病

    歡迎了解何時以及為何應考慮為患有 DEE 的孩子進行癲癇手術。我們的嘉賓將是：約翰霍普金斯醫院小兒癲癇手術計畫醫療主任艾哈邁德·馬拉什利(Ahmad Marashly) 博士和小兒癲癇手術聯盟法學博士創始人兼執行董事莫妮卡·瓊斯(Monika Jones) 在本次網路研討會中，您將：- 了解癲癇簡介…