Videos

Beginner’s Guide to Community Activation — RARE Advocacy Summit 2023

January 26, 2024

As part of the Community & Capacity Building track from the 2023 RARE Advocacy Summit, this panel discusses how to engage community, welcome the newly diagnosed, bond through local and online meetups, communicate effectively, and activate people to participate in research and data collection.

Beginner’s Guide to Community Activation

Moderator:
Wendy Erler
Global Head, Patient Experience, Patient Advocacy and Patient and Caregiver Insights, AstraZeneca

Panelists:
* Kasey Woleben
Founder, Rare Village

* Kim Stephens
Executive Director, Joseph Muenzer’s MPS Research and Treatment Center of UNC President, Project Alive
Director, SMA Foundation

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