A recent newspaper headline,
has left me pondering lately, late into the night, many questions regarding the role and value of storytelling in the rare disease community. As someone who considers myself to be a storyteller, the topic isn't a new theme of my thoughts but the longing to get outside my own head and hear what others in the community have to say has grown ever more hungry.
Perhaps you too have noticed the requests for "real stories" in the rare disease community grow exponentially lately? There seems to be many new online platforms developed by different groups, including My Normal, to facilitate story sharing in the current rare disease environment. Even without any prompting, many of us are already taking advantage of social media tools to put our stories out there, for a variety of reasons and interests.
The growing opportunities for storytelling are definitely an exciting development in knowledge generation & dissemination for the rare disease community but perhaps a tad overwhelming simultaneously. There feels like there's also a space opening up for talking about the changing role of storytelling in the rare disease sector and undoubtedly a plethora of perspectives to bring to the table about what's happening.
Inspired by the menacing headline, I decided to pull together a survey with the plan to try to capture some of the perspectives, with the intention of sharing the information in a way that supports the future of storytelling in the rare disease community.
Persons Living with a Rare Disease
Other (please specify)
Please consider taking part if you've participated in the creation or sharing of a rare disease story, your own or someone else's, in a personal, public or professional context. You might keep your own blog, have written a book, made a video or given a talk. It doesn't matter how you get the story out there. The more perspectives the richer the outcomes. Click for more information and to take part.
The survey deadline has been extended until Sunday, May 18th. Some of the results will be presented by poster at the upcoming European Conference on Rare Diseases & Orphan Products in Berlin.