The GRT Infographic (a type of story) tells us that “23 patient stories so far” have been shared on the Running for Rare Diseases blog. To mention just a few, we’ve been exposed to blogs, like Erica’s Rarely Defined, watched videos such as Brianna’s walkabout, read Tara’s writing series, Those Silent Tears, and smiled with Eli’s FaceTime snapshots. Runners have given us non-stop updates on their training progress, connections with patient partners and the many steps towards reaching their PBs (Personal Bests). Major milestones have been tracked along the way to Marathon Monday, including special fundraising events, the Rare Disease Day Relay and more recently the last long training run. The stories have just kept coming and I’m sure helped us stay connected, focused and together!
Sharing our stories can sometimes be rewarding, even healing and confidence building, but at times perhaps also difficult, frustrating and time consuming to get it just right! While staying posted on your stories, through the blog, many questions have risen for me about the role of storytelling in the rare disease community and how exactly stories take shape. As a result of taking part in this reading marathon, I decided to put together a survey, hoping to hear some of YOUR perspectives about storytelling, such as why you do it.
Anyone who has shared a rare disease story, your own or someone else’s, in any format, will have something unique to add to the survey. Some of the information gleaned from the survey results will be presented at the European Conference on Rare Diseases & Orphan Products coming up in May and then available as a guide on the My Normal website. The intention is that the information will help us better understand what storytelling does in the community and also to strengthen the storytelling that happens!
Please consider participating in the Rare Diseases Storyteller’s Perspective (survey only open until April 18th):