Using Storytelling to Raise Awareness For Your Rare Disease

Learning that you or a loved one has a rare or undiagnosed condition can be scary, confusing, isolating, and often forever life-altering.

“Where should I begin? How do I communicate what is going on with my friends, family, or healthcare providers?” 

Many within the rare disease community do not know how great an impact they can have by sharing their story. Telling your story can be difficult, but this toolkit is intended to help you
overcome the challenges by offering advice on ways to get started.

Sharing a rare disease story may feel like one more thing to worry about on a growing task list for managing a rare disease. While it’s common for novice and even experienced storytellers to have doubts about sharing a personal experience, this should not overshadow the importance of storytelling for the rare disease community.

Many people within the rare disease community have searched long and hard for a story that resembles their own, but with little success. The isolated nature of many rare diseases makes it essential to speak up. Your individual story could be invaluable to someone still searching. It’s also an important way to raise awareness about a disease and can help researchers, doctors, and donors understand the human dimension of the work they do and support.

Download Toolkit