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Send us a text (Note: we are not able to respond but LOVE to hear from you!!)
In this episode, we sit in on the Rare Advocacy Exchange virtual series. Global Genes is hosting this series in an effort to empower rare disease leaders. As moderator, I facilitated a panel that focused on the challenges and rewards of leading in the rare disease space.
The conversation covered the importance of community, collaboration, and using personal experiences to drive change. Panelists shared their journeys of advocacy, highlighting how moments of isolation became opportunities to connect and push for change.
This episode is a must-listen for anyone passionate about rare disease advocacy, offering inspiration and insights for creating meaningful impact.
Episode Resources:
Parenting Differently When You Expect A Shorter Life with Daniel DeFabio
Global Genes
Global Genes: Rare Advocacy Exchange
Cure DHDDS
By Kara Ryska5
117117 ratings
Send us a text (Note: we are not able to respond but LOVE to hear from you!!)
In this episode, we sit in on the Rare Advocacy Exchange virtual series. Global Genes is hosting this series in an effort to empower rare disease leaders. As moderator, I facilitated a panel that focused on the challenges and rewards of leading in the rare disease space.
The conversation covered the importance of community, collaboration, and using personal experiences to drive change. Panelists shared their journeys of advocacy, highlighting how moments of isolation became opportunities to connect and push for change.
This episode is a must-listen for anyone passionate about rare disease advocacy, offering inspiration and insights for creating meaningful impact.
Episode Resources:
Parenting Differently When You Expect A Shorter Life with Daniel DeFabio
Global Genes
Global Genes: Rare Advocacy Exchange
Cure DHDDS

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