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PR: Rare Disease Communications Strategy

Global, Clinical, Public

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. Newron needed to illuminate breathing difficulties as a critical element of Rett Syndrome within the scope of Newron’s mission. The goal was to drive focused messaging across stakeholders to communicate the severity of Rett syndrome symptoms

LHS Solution

  • 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

Results

  • 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

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