How to Promote Your Rare Disease Story Through Social Media

January 29, 2019

Most rare diseases are not well understood, do not have a cure, and have limited treatment options available. Therefore, living with a rare disease is an ongoing learning experience for many patients and their families.

By telling a personal story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis and help to raise awareness. Personal stories frame our individual rare experiences in a way that lets us better connect. To learn more about why rare disease stories matter and how to put together a story, turn to the Using Storytelling to Raise Awareness for Your Rare Disease toolkit (

This toolkit complements our Using Storytelling toolkit but goes one step further by helping storytellers bring greater awareness to their personal journeys by taking advantage of
social media. This Toolkit focuses on the value, use, and practical application of social media to promote our stories.

Download Toolkit

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