Member Resources
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ECHO Genetic Resource
Genetic testing is increasingly important in the evaluation and management of individuals with epilepsy, yet many patients and families still face barriers to understanding their options. The Rare Epilepsy Network (REN) has developed a free educational resource for clinicians, patients, and families to help bridge this gap—while supporting the critical role child neurology nurses play in patient education and care coordination.
REN’s Genetic Testing for the Epilepsies website provides clear, accessible information that nurses can share directly with patients and caregivers. The resource includes an overview of genetic testing for epilepsy, explanations of potential results, and highlights how identifying a genetic cause can inform prognosis, treatment decisions, clinical trial eligibility, and family planning. It also addresses common patient questions and includes a search tool to help families find testing services and epilepsy-experienced genetic counselors.
This freely available resource was developed by a University of Pennsylvania Master’s student in Genetic Counseling in collaboration with the Boston Children’s Hospital genetic counseling team. It is designed to supplement clinical conversations and support nurses in reinforcing information, reducing confusion, and helping ease the prolonged diagnostic odyssey many families experience.
Child neurology nurses are encouraged to explore and share this resource with their patients, families, and professional networks to support clear, evidence-based discussions about genetic testing in epilepsy care.
Access the resource here:
www.rareepilepsynetwork.org/genetictesting
Research and Peer Reviewed Publications
- A Qualitative Analysis of School Nurses' Experience Caring for Students With Psychogenic Nonepileptic Events
- Association of Headache With School Functioning Among Children and Adolescents in the United States
- Chapter 24 - Managing migraine at school
- Distinguishing the Diagnosis and Management of Sleep Disturbance and Sleep Disorders in Multiple Sclerosis
- Factors Associated With, and Mitigation Strategies for, Health Care Disparities Faced by Patients With Headache Disorders
- Familial History of Autoimmune Disorders Among Patients With Pediatric Multiple Sclerosis
- Outcomes in Children and Adolescents With Psychogenic Nonepileptic Events Using a Multidisciplinary Clinic Approach
- Outcomes of children and adolescents 1 year after being seen in a multidisciplinary psychogenic nonepileptic seizures clinic
- Pediatric Headache Attributed to Infection
Caregiver Resource Guides
The ACNN Caregiver Resource Guides were developed to help prepare caregivers for a child neurology clinic visit by outlining strategies caregivers can use to optimize child neurology clinic appointments.
These Caregiver Resource Guides were made possible through funding provided by Eisai, Inc. and in collaboration with the Child Neurology Foundation.
LIMITATION OF LIABILITY
To the extent permitted by law, the Association of Child Neurology Nurses (ACNN) shall have no liability, relating to use of this document for damages of any kind, including but not limited to direct, indirect, consequential, incidental, exemplary, special, or punitive damages.
ACNN reserves the right, at any time, with or without notice, to amend, modify, suspend, or delete this document, and/or use of or access to it without liability of any for modification, suspension, or termination.