Rare Toolkits: Using Storytelling to Raise Awareness for Your Rare Disease

This toolkit provides guidance to patients who would like to share their experience having, or caring for someone with, a rare disease. Patient stories are increasingly shared at medical conferences, during board meetings, and as part of improvement projects. This toolkit provides patients with assistance in writing and telling their story. It includes advice on getting started, questions to consider when writing, and an extensive resource section.