RARE Storytelling Workshop 20240716

A 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! This workshop covers a wide array of media for storytelling from blogs to podcasts and verbally in person. Presenters include Jennifer Siedman from Courageous Parents Network, Stephanie Riordan from EveryLife Foundation, Mike Porath fromThe Mighty and Daniel DeFabio of Global Genes.