PR: Rare Disease Communications Strategy


Spotlight on Rett Syndrome Burden of Disease

  • The impact of daytime breathing apneas on Rett patients have been historically discounted in the medical community’s understanding of the disease
  • Illuminate breathing difficulties as a critical element of Rett Syndrome within the scope of Newron’s mission
  • Drive focused messaging across stakeholders to communicate the severity of Rett syndrome symptoms
  • Use “surround sound” multi-media approach to communicate impacts of breathing difficulties, and the subsequent burden placed on Rett patients and their families
  • Increase investor awareness on the impact of this fundamental re-understanding
  • Build international visibility for Newron’s Rett Burden of Disease study
  • Highlight Rett Awareness Month on social channels with a focus on burden of disease
  • Developed a video series on the burden of disease employing personal stories from patients and families
  • Planned and executed a successful investor event with high in-person and webinar attendance
    • On target messaging from leading experts in the field
  • Developed and shared original content during Rett Awareness Month