Empowering Rare Disease Leaders through the Rare Advocacy Exchange Series hosted by Global Genes

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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

Connect with Kara, host of The Special Needs Mom Podcast:
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Website: https://www.kararyska.com/