Webinars & Other Content
- DEEP Submits Formal Comments Opposing OMB Proposal That Threatens Progress in Rare Epilepsy Research
- FDA Guidance To Accelerate Individualized Therapies for Ultra-rare Diseases
- Understanding ASOs & Informed Consent
- Seizure Clusters Vs. Status: What Every Caregiver Needs To Know
- Dignity in Design: Why Universal Changing Stations Cannot Wait
- Navigating Respiratory Care for Medically Complex Children
- Understanding Quality of Life in Developmental and Epileptic Encephalopathy
- Caring Together: Families, Providers, and the Role of Palliative Support
- Navigating GI Interventions: From Testing to Treatment
- Lightening the Load: How AI Can Support Families Managing Complex Care
- Parent Perspectives Insights Into Medical Decision-making
- Stronger Together: Reflections from the FamilieSCN2A Conference
- Strong Bipartisan Rejection by Senate Appropriations Subcommittee to Deep Cuts to NIH and Medical Research; Directs Focus on Pediatric Epilepsies
- A Devastating New Roadblock to Rare Epilepsy Care and Cures
- What’s At Stake for Medicaid and How To Take Action
- Real Moms, Real Stories: Advocacy That Inspires
- Relationships 101: Marriage & Parenting a Medically Complex Child
- The Life-Saving Nature of Epilepsy Surgery
- Growing Together: Navigating the Life Stage Checklist for Families
- DEE Caregivers Share Urgent Needs for Accelerated Treatment and Improved Measurement for DEEs
- Why do I love DEE-P Connections?
- ALL ABOUT The Connected Parent
- Our CVI Journey
- How to Get Grants and Funding for Medical Expenses
- Sleep & DEEs
- Are we giving sleep enough attention?
- Traveling with Your Medically Complex Child
- Nambah Akses menyang Uji Coba Klinis lan Perawatan Anyar ing DEE
- Ngatur Perjalanan karo Anak Komplek
- Sumbangan Otak: Apa sing kudu ditimbang, cara kerjane lan kepiye bisa mbantu
- Cortical Visual Impairment (CVI) lan Developmental and Epileptic Encephalopathies (DEEs)
- Nyegah Caregiver Burnout: A Workshop on Building Resilience
- Napa EEG Penting lan Apa Sing Bisa Dicethakaké
- Ora didiagnosis
- Kursus Crash IEP
- Kesehatan Tulang kanggo DEEs
- Perawatan Langka & Tantangan karo Self-Care - Diskusi DEE-P
- Program kanggo Mbantu Ngrawat Anak Komplek Kita - Rawat Inap lan Rawat Jalan
- Nglindhungi Akses Langka kanggo Perawatan Off-Label
- Sinau Cara Ngoptimalake Data Kanthi CRID
- Masalah GI lan Gangguan Neurodevelopmental
- Bedah Epilepsi lan Epilepsi Genetik Langka
- Diet Ketogenik lan DEEs
- Kesehatan Lisan lan Kebersihan Kanggo Sing Ora Mangan Mbukak
- Bali menyang Sekolah SAP
- Apa sing kita sinau babagan vaksin lan infeksi COVID-19 ing wong sing nandhang epilepsi langka?
- Planificación SAP de verano: lo que necesita saber y hacer for estar preparado
- Perencanaan Tindakan Penyitaan Musim Panas - Apa sampeyan kudu ngerti lan nindakake supaya bisa disiapake
- Napa Sumbangan Jaringan Otak Penting
- Terapi Atenuasi Pertumbuhan - Kabeh Sampeyan Kepengin lan Perlu Dingerteni
- Pilihan Teknologi Tinggi kanggo Komunikasi Alternatif lan Akses ing Omah
- Sistem Komunikasi Low-Tech/No-Tech kanggo Bocah-bocah karo Kebutuhan Komunikasi Komplek
- Mbukak Misteri Ataxia, Hipertonisitas, Athetosis lan Nada Campuran
- Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays
- An Overview of Hypotonia and How it Impacts Overall Functioning and Development
- Dhukungan & Perawatan Hospice Anak
- RAKAMAN - Langkah-langkah Kasil Maju kanggo Populasi sing Dipengaruhi Parah
- RECORDING - NILAI STATUS LAN KESEMPATAN
- Apa sing bisa ditindakake kanggo ngobati epilepsi?
- Teknologi Seizure - Teknologi Muncul kanggo Prediksi lan Ndeteksi Kejang
- Seizure Technology – Tracking
- Seizure Technology – Monitoring
- How Effective is Your Epilepsy Care?
- Rare Epilepsy Syndrome: ESES, CSWS, EECSWS?
- Be Prepared – Guiding You Through the Journey of Planning for a Secure Future for your DEE Child
- Seizure Action Plan Awareness
- Sudden Unexpected Death in Epilepsy (SUDEP) Part 3 – Family Perspectives
- Sudden Unexpected Death in Epilepsy (SUDEP) Part 2: What can we do?
- Nerve Stimulators- Could a VNS, DBS, or RNS Help?
- ABC saka Uji Coba Klinis Part 2 - Apa Saben Kulawarga Penyakit Langka Kudu Ngerti
- Uji Coba Klinis ABC Part 1 – Dasar
- Sudden Unexpected Death in Epilepsy (SUDEP) Part 1: What do we know?
- Curing the Epilepsies Part 2
- Curing the Epilepsies Part 1
- Rescue Medications for DEEs Series – Part 4
- Disfungsi otonom / Dysautonomia
- Nyimpen Telehealth Kita kanggo Keluarga DEE
- Rescue Medications for DEEs Series – Part 3
- Rescue Medications for DEEs Series – Part 2
- COVID-19 Vaccines and Epilepsy – Focus on DEE Population
- Rescue Medications for DEEs Series – Part 1
- Promoting Healthy Relationships between Those with Severe Epilepsy and Their Siblings
- Ngapikake Kualitas Perawatan ing Epilepsi Bocah Langka
- Strategies for Learning at Home with your DEE Child and Engaging the Whole Family
- Navigating Safety for Pediatric Epilepsy Patients in COVID-19 Environment
- COVID -19 Through the Lens of Grief
- Genetika saka DEEs
- Nglindhungi Kompleks Medis lan / utawa Bocah-bocah sing Ditekan Kekebalan kanthi Epilepsi saka COVID-19
- IEPs for Children with Severe DEEs
- Ringkesan DEE lan DEE-P
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