Dravet Syndrome Foundation | Strategic Alliance Partners

As part of our monthly clinician spotlight, NeurologyLive® highlighted seizure disorder expert Danielle Andrade, MD, MSc, FRCPC, director of the Adult Genetic Epilepsy Program at the University of Toronto.

The director of research in the Jane and John Justin Neurosciences Center at Cook Children's Health Care System talked about ongoing research on biomarkers to enhance treatment and improve cognitive outcomes. [WATCH TIME: 6 minutes]

A trio of experts from university hospitals discussed a study that aimed to uncover the prevalence and associations of limb swelling in patients with Dravet syndrome in hopes of improving care. [WATCH TIME: 5 minutes]

A duo of experts provide insight on various topics related to the advances in treatment options, diagnosis of the disorder, role of genetics, and potential future research and gene therapies.

Fenfluramine was originally approved as a therapy for Dravet syndrome in 2020, and later gained expanded indication for Lennox-Gastaut syndrome in 2022.

A survey conducted in conjunction with the Dravet Syndrome Foundation suggests that many patients with DS do not undergo the transition of care from pediatric to adult neurology providers, with caregivers of those who did expressing some concerns about the process.

Joseph E. Sullivan, MD; Kelly Knupp, MD; Mary Anne Meskis; and Tracy Dixon-Salazar, PhD, share insight into the patient and provider journey of LGS and Dravet syndrome, from diagnosis through treatment.

Progress in therapeutics and diagnosis over the past decade has dramatically shifted the treatment landscape for this genetic epilepsy and rapidly advanced patient care.

In recognition of Rare Disease Day, the NeurologyLive® team offered an extensive update on the state of care and treatment for a wide range of rare neurological diseases, including Kleine-Levin syndrome, amyotrophic lateral sclerosis, cerebral palsy, Lennox-Gastaut syndrome, and more.

The medical director of the Epilepsy program at the University of Toronto discussed her presentation at AES 2021 regarding the need to change how clinicians view and treat patients with developmental epileptic encephalopathies.

Leaders in the epilepsy space provided their thoughts on the most promising aspects, initial takeaways, and dominating conversations at the 2021 American Epilepsy Society annual meeting.

The scientific director at the Dravet Syndrome Foundation commented on the concern associated with vaccination in this patient population, noting that investigators have not observed an exacerbated risk profile with the COVID-19 vaccines. [WATCH TIME: 2 minutes]

The scientific director at the Dravet Syndrome Foundation discussed a recent survey asking caregivers about the experiences of patients with DS following COVID-19 vaccination. [WATCH TIME: 3 minutes]

The registered dietitian at Ann & Robert H. Lurie Children’s Hospital of Chicago provided knowledge on the how and why diets are constructed for patients with epilepsy.

The registered dietitian at Ann & Robert H. Lurie Children’s Hospital discussed the unknowns in terms of managing and prescribing diets for patients with epilepsy. [WATCH TIME 3 minutes]

The registered dietician at Ann & Robert H. Lurie Children’s Hospital of Chicago provided insight on the importance of educating youths with epilepsy on diets, especially in the transition stages of care. [WATCH TIME: 2 minutes]

The registered dietician at Ann & Robert H. Lurie Children’s Hospital of Chicago discussed whether epilepsy type factors into the decision to use a given dietary approach. [WATCH TIME 2 minutes]

The registered dietician at Ann & Robert H. Lurie Children’s Hospital of Chicago provided commentary on the multidisciplinary efforts to tailor a patient’s diet. [WATCH TIME: 3 minutes]

The registered dietician at Ann & Robert H. Lurie Children’s Hospital of Chicago discussed the variety of diets available to patients with epilepsy and how they differ from one another. [WATCH TIME: 3 minutes]

The importance of early diagnosis of Dravet syndrome as well as seizure triggers and comorbidities are discussed by key opinion leaders in the field.

Mary Meskis, executive director of the Dravet Syndrome Foundation, provided a opportunities the organization is offering in honor of Dravet Syndrome Awareness Month.

Kim Bishop, PhD, and Arnold Gammaitoni, PharmD, discussed the ways fenfluramine impacts not only seizure frequency, but executive function in individuals with Lennox-Gastaut syndrome.

A recent study investigated the natural history of Dravet Syndrome in adults.

Veronica Hood, PhD, writes a recap of research and treatments for epilepsy presented at the meeting.

The Dravet Syndrome Foundation offers a list of online resources for patient families.

A parent's perspective of the Partners Against Mortality in Epilepsy (PAME) 2020 meeting.

Veronica Hood, PhD, of the Dravet Syndrome Foundation, details the recently accepted ICD-10 codes for Dravet syndrome and what benefit they bring to patients.

The research coordinator of the Dravet Foundation provided background on the new ICD-10 codes announced for Dravet syndrome and how they came about.

The new codes have broader implications in helping clinicians understand the morbidity and mortality related to the disorder.