يازمىلار خەتكۈچ 'video'
كىلىنىكىلىق سىناقنىڭ ABC 2-قىسمى - ھەر بىر ئاز ئۇچرايدىغان كېسەللىك ئائىلىسى بىلىشكە تېگىشلىك ئىشلار
This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – What Every Rare Family Should Know,” which was held on October 21st, 2020. Our Caregiver…
تېخىمۇ كۆپ ئوقۇڭABC نىڭ كلىنىكىلىق سىناقلارنىڭ 1-قىسمى - ئاساسى
This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – Get Your Community Prepared,” which was held on September 14th, 2020. This webinar included a…
تېخىمۇ كۆپ ئوقۇڭتۇتقاقلىق كېسىلى (SUDEP) تۇيۇقسىز كۈتۈلمىگەن ئۆلۈم 1-قىسىم: بىز نېمىنى بىلىمىز؟
What do we know about SUDEP? What don’t we know? What is the state of the research? This webinar helps answer those questions, and more, with three experts: Sally Schaeffer…
تېخىمۇ كۆپ ئوقۇڭتۇتقاقلىق كېسىلىنى داۋالاش 2-قىسىم
This is a recording of the second webinar in this series—developed in conjunction with the the Epilepsy Leadership Council and the Rare Epilepsy Network—on Curing the Epilepsies, which was held…
تېخىمۇ كۆپ ئوقۇڭتۇتقاقلىق كېسىلىنى داۋالاش 1-قىسىم
This is a recording of the webinar “Curing the Epilepsies: Part 1,” which was held on September 14th, 2020. This is a recording of the first webinar in this series—developed…
تېخىمۇ كۆپ ئوقۇڭDEEs يۈرۈشلۈك قۇتقۇزۇش قۇتقۇزۇش دورىلىرى - 4-قىسىم
This webinar was originally broadcast live on August 12, 2020 and featured a review of the first 3 webinars in the Rescue Medications for DEEs series and a panel of…
تېخىمۇ كۆپ ئوقۇڭئاپتونومىيە ئىقتىدارى ئاجىزلاش / Dysautonomia
Does your child suffer from digestive and/or urinary motility problems? Do they suffer from temperature regulation issues? Do they have irregular blood pressure and/or heart rate? When you have ruled…
تېخىمۇ كۆپ ئوقۇڭDEE ئائىلىلىرى ئۈچۈن تېلېفونىمىزنى تېجەش
This is a recording of the webinar “Saving Our Telehealth,” which was held on July 20th, 2020. For families who have trouble leaving the house with their medically fragile children,…
تېخىمۇ كۆپ ئوقۇڭDEEs يۈرۈشلۈك قۇتقۇزۇش قۇتقۇزۇش دورىلىرى - 3-قىسىم
This webinar was originally broadcast live on July 22, 2020 and featured a panel of caregivers sharing their experiences utilizing rescue medications for DEEs. This third webinar of the Rescue…
تېخىمۇ كۆپ ئوقۇڭDEEs يۈرۈشلۈك قۇتقۇزۇش قۇتقۇزۇش دورىلىرى - 2-قىسىم
This webinar, which was originally broadcast live on July 8, 2020, gave a synopsis of recent in-depth interviews with DEE caregivers about their experiences utilizing rescue medications for DEEs and…
تېخىمۇ كۆپ ئوقۇڭ