Organization consolidated with Dravet Syndrome Foundation in 2014

Mission:

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

Services:

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