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Understanding ASOs & Informed Consent
Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and KCNT1 Epilepsy explore the…
Baca LagiMeningkatkan Akses kepada Percubaan Klinikal dan Rawatan Baharu Di Seluruh DEE
Ini ialah rakaman webinar yang diadakan pada 29 April 2024. Ini ialah perbualan tentang model percubaan klinikal yang menjanjikan untuk rawatan epilepsi baharu yang mempercepatkan akses kepada…
Baca LagiMengapa EEG Penting dan Perkara yang Boleh Didedahkan
Ini adalah rakaman webinar DEE-P yang dirakam pada 12 Oktober 2023. Pernahkah anda terfikir adakah lebih banyak lagi yang boleh kita pelajari daripada EEG…
Baca LagiTidak didiagnosis
Perbincangan DEE-P ini telah dirakamkan pada 13 September 2023. Semasa Perbincangan DEE-P ini, kami meneroka pengalaman mempunyai anak dengan gangguan epilepsi jarang yang tidak didiagnosis. Kami membincangkan berbeza…
Baca LagiPEREKODAN – Langkah-langkah Keberhasilan Terdahulu untuk Penduduk Yang Teruk Terjejas
Building a Consortium to Advance Outcome Measures for Severely Affected Populations This is a recording of the second workshop, held November 11th 2021, focused on Building a Consortium to Advance…
Baca LagiMERAKAM – MENILAI STATUS DAN PELUANG
ASSESSING STATUS AND OPPORTUNITIES FOR DEVELOPING OUTCOME MEASURES FOR THE MOST SEVERELY AFFECTED POPULATIONS This is a recording of day one of the workshop, held November 4th 2021, and was…
Baca LagiApakah yang ANDA boleh lakukan untuk membantu menyembuhkan epilepsi?
This is a recording of webinar which was held on October 20, 2021. This special session brought together the leaders from government, clinician-researchers, and advocates who devoted two years to…
Baca LagiSejauh manakah Keberkesanan Penjagaan Epilepsi Anda?
We all want our kids to get the best care possible. But how effective has your child’s epilepsy care been? What can we do to improve outcomes? This conversation—with three…
Baca LagiABC Percubaan Klinikal Bahagian 2 – Perkara Yang Setiap Keluarga Penyakit Jarang Perlu Tahu
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…
Baca LagiPercubaan Klinikal ABC Bahagian 1 – Asas
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…
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