Better Together for Kids
Better Together for Kids
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In March of 2021, the Child Neurology Foundation brought together 16 advocacy and industry leaders to discuss the reality of these complex relationships, and how to make them more productive. We called this ongoing conversation, Better Together for Kids. Throughout the year, this group met virtually in a learning-collaborative framework to focus where there is an apparent mismatch between the goals, needs, and priorities of advocacy groups and their industry counterparts. We had the hypothesis that both groups share a true desire to have a more productive relationship, but exist within frameworks that make it difficult to understand each other’s roles, needs and priorities.

And the hypothesis turned out to be true!

Participants consistently engaged in 6 facilitated discussions which yielded deeper insights and opportunities for applied change between these stakeholder groups. We hope to begin to share these shared learnings in early 2022, including practical relationship-building tactics both industry and advocacy partners can utilize, insights into industry compliance rules and regulations, and clarification over language that carries different meanings whether you are an industry partner versus a patient advocate. As well as many others!

In fact, there was such energy to continue this conversation, CNF will continue it into 2022 with expanded participation! Stay tuned here for more information!

For now, CNF would like to thank the following groups for joining in the inaugural convening of Better Together for Kids:

  • Batten’s Disease Research & Support Association
  • Biomarin
  • Dravet Syndrome Foundation
  • Eisai
  • FamilieSCN2A Foundation
  • Global Genes
  • Greenwich Biosciences
  • Hope for HIE
  • Neurelis
  • PTC Therapeutics
  • The Cute Syndrome Foundation
  • TSC Alliance
  • UCB
  • Upsher Smith Laboratories
  • VNS Therapy by Liva Nova
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