Digital education series in rare disease for HCPs and patients features leading experts, advocacy organizations and families facing Dravet syndrome and Lennox-Gastaut Syndrom (LGS).

February marks the beginning of a year-long, digital education initiative for HCPs and caregivers with children with pediatric epilepsy, presented in partnership with leading aligned advocacy organizations like the National Organization for Rare Disease (NORD) and Dravet Syndrome Foundation, and more.

“We are excited for the opportunity to provide education to HCPs and caregivers to help alleviate some of the significant burden Dravet syndrome, Lennox-Gastaut Syndrome (LGS), and other pediatric epilepsies places on the patient and family/caregiver,” shared Robert Rosenbloom, CEO of PlatformQ Health. “HCPs need more education to not only be able to better recognize, diagnose, and treat these conditions, but to address the full burden of disease and its adverse effects – including clinical and non-clinical quality-of-life and financial issues that arise while caring for their child. Similarly, caregivers and families will have their own track of programs, released throughout the year, offering best in class and practical information to help families provide the best care for their loved one.”

HCPs will have free access to four live-online, interactive CME/CE activities on Dravet syndrome, Anti-epileptic drugs (AEDs) and Lennox Gastaut Syndrome:

  • February 2020 – Humanistic and Economic Burden of Dravet Syndrome: Multidisciplinary Approach to Recognize and Address
  • April 2020 – Dravet Syndrome: Opportunities for Improvement in Diagnosis and Management
  • June 2020 – Assessing the Impact of AEDs: What Constitutes Clinical Meaningful Effect for Dravet Syndrome
  • January 2021 – Lennox Gastaut Syndrome: Optimizing Diagnosis, Treatment, and Patient Outcomes

In addition, a series of eight online educational programs will be released for caregivers and families, focusing on shared decision making, early disease stages (recognizing symptoms, post-diagnosis), effective therapies, managing care transition, and family demands & resources. The initiative will also support a live interactive online broadcast for caregivers in Fall of 2020 with additional opportunities for live and pre-session Q&A with expert, advocacy and peer panelists.

“This series of educational programs will provide an important educational opportunity for our patient community,” explained Mary Anne Meskis, Executive Director at Dravet Syndrome Foundation. “Because of the high care burden for someone with Dravet syndrome, travel to in-person conferences or workshops is difficult for families and caregivers. These virtual events offer a chance to learn from home as the caregiver’s schedule allows.”

The initiative will launch February 13th with a program designed for HCPs and caregivers to view together – an aligned educational program – on Dravet Syndrome. The Humanistic and Economic Burden of Dravet Syndrome: A Multidisciplinary Approach to Recognize and Address will focus on:

  • The burden of caring for a child with Dravet syndrome from a caregiver’s perspective – the strain of caring, stigmatization, and financial toll
  • Effects on caregivers, siblings and family members – a focus on mental health and caregiver quality of life as a quality measure for HCPs
  • Caregiver support & education on best practices on caring for their child, and its influence on the child’s evaluation and management
  • Interventions for physical, emotional, social and financial support

Participants will hear from HCPs, advocacy leaders, as well as a parent of a child with Dravet syndrome – Kelly Knupp, MD, MSCS of University of Colorado, Anschutz Medical Campus, Dagmar Amtmann, PhD of University of Washington, Seattle, and Nicole Villas, Board President & Scientific Director of Dravet Syndrome Foundation.

“At NORD, we are grateful for the opportunity to present actionable continuing medical education for health care professionals and impactful programming for rare disease patients and caregivers,” said Peter L. Saltonstall, President and CEO of NORD. “We are proud of our partnership with PlatformQ Health and look forward to together providing programs that will positively impact the future of the rare community.”

This series of activities is supported by an educational grant from Zogenix, Inc.