Organization consolidated with Dravet Syndrome Foundation in 2014


To educate, inform, assist, and advocate for the families and caregivers of children with Dravet Spectrum Disorders, a class of rare genetic epilepsies.


As Dravet.org’s Patient Information Specialist, I was responsible for:

  • Preparing and disseminating information, news, and educational materials related to Dravet Spectrum Disorders, the organization’s activities, and constituent activities
  • Writing, editing, and publishing a biweekly e-newsletter and e-mail blasts
  • Maintaining the website’s “News & Events” and “Ask the Expert” sections
  • Writing patient education brochures and reports, press releases, advertisements, and other media materials as requested
  • Designing graphics for the website, publications, and events
  • Preparing and implementing policies and procedures for communications and social media

Author: Paul Lagasse

Paul Lagasse provides expert-to-expert communications services to nonprofit, business, and government clients in the metro Baltimore-DC area. Specialties include science and medical writing, technical report editing, and content marketing.