Resources Resources Available Resources KCNQ2 Educational Materials | Patient & Family Support Resources | Medical Resources | School Resources | Research Resources | Patient Advocacy Resources | Travel Resources | Financial Resources KCNQ2 Educational Materials Handbooks and brochures Expand KCNQ2 Parent and Caregiver Handbook Brochure Cambridge Elements Educational Videos Expand KCNQ2 Cure YouTube Channel Glossaries Expand Gene Therapy Terms Drug Development Terms Clinical Trial Terms Back to top Patient & Family Support Resources KCNQ2 Cure Support Programs Expand Newly Diagnosed KCNQ2 Global Support Facebook Group Care Resources Expand Respite care notebook (Child Neurology Foundation) Caring for the Caregiver Expand Respite Care Notebook (Child Neurology Foundation) Federal & State Resources Expand Medicaid waivers by state Title V CSHCN (children with special healthcare needs) Director by State Title V State Profiles Back to top Medical Resources Creating a Care Team Expand Find a doctor Child Neurologist New Visit Toolkit (Child Neurology Foundation) Community Resources Expand Children's Hospital of Philadelphia Community Resource Database Child Neurology Foundation Resources Seizure Learning & Training Expand The Epilepsy Learning Portal (Epilepsy Foundation) Seizure First Aid Training and Certification (Epilepsy Foundation) Seizure First Aid & Training with our Member Organizations (Epilepsy Alliance America) Seizure Safety (Epilepsy Foundation) Seizure & Epilepsy Resources Expand Epilepsy Foundation: Seizure Preparedness & Safety Epilepsy Foundation 24/7 Emergency Helpline Seizure Action Plan Templates (Epilepsy Foundation Seizure Action Plan (Epilepsy Alliance America) Downloadable Seizure Forms (Epilepsy Foundation) Infantile Spasms Expand Infantile Spasms (Child Neurology Foundation) The Infantile Spasms Community Discussion Group (Facebook) Back to top School Resources School Resources for Children with Complex Health Needs Expand Child Neurology Foundation IEPs Before You Start – Make Your Resource Binder Expand Individuals with Disabilities Education Act The U.S. Code of Federal Regulations Your state’s education act and regulations Model form of prior written notice Federal guidance on your procedural safeguards Special Education Law in Each of the 50 States Special Education Law book (Wrightslaw) IEPs (Individual Educational Plans) Expand Understanding IEPs (Understood) IEP and 504 Plans Videos How to Prepare for an IEP Meeting | Checklist (A Day in Our Shoes) How to Organize Your Child’s IEP Binder (Understood) 504 Plans Expand Section 504 Protections for Students with Epilepsy (US Department of Education) Model 504 Plan for a Student with Epilepsy (Epilepsy Foundation) School Supports and IEP and 504 Accommodations for Autism (Undivided) Special Education Advocacy (Wrightslaw) Epilepsy in School Expand Seizure Training for School Nurses Safe Schools Course (Epilepsy Foundation) Seizures in School (CDC) Cerebral/Cortical Visual Impairment (CVI) Expand CVI Now IEP Guide (Perkins School for the Blind) Back to top Research Resources KCNQ2 Research Resources Expand How to Participate in Research Clinical Trial Opportunities Back to top Patient Advocacy Patient Advocacy Expand When You and Your Child’s Clinicians Have Different Ideas or Styles: How To Find a Way Forward (Courageous Parents' Network) Back to top Travel Resources Medical Transportation Expand CHOP List of Medical Travel Assistance Traveling with Medically-Fragile Children Expand TSA Cares Program Hidden Disabilities Sunflower Program Packing Expand Best packing list Back to top Financial Resources Financial Resources Expand Managing Finances for Those with Special Needs
