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Global Genes RAREly Told Stories Workshop

Have you wanted to tell the story of your life with a rare disease?

We are excited to offer a new workshop on telling your rare disease story — the RARE Storytelling Workshop. Learning to craft your narrative  not only helps you raise awareness about your specific rare condition, but can also shed light issues facing the broader rare disease community. You can use your story to inspire others, share the patient voice, help drive new research forward, and advocate for better healthcare policies. This workshop will provide you with the tools and information necessary to get started!

Register to Attend

This workshop covers a wide array of media for storytelling from blogs to podcasts and verbally in person. We’ll have expert presenters from Courageous Parents Network, EveryLife Foundation and The Mighty.

For more information about video storytelling, you can watch the RAREly Told Stories video workshop linked below that goes more in depth on this subject.


Jul 16 2024


All Day

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