Chat Summary 250: #RareDiseaseDay: Do stories change anything?

By Emma Rooney (@blumencasey)

On February 3^rd #hcsmca explored how stories can change things. We asked

• T1. How do patient stories impact the rare disease community?
• T2. How can we better value patient stories and respond to the insights shared?
• T3. What benefits should patients look for from contributing their stories?
• T4. What stories are missing from the rare disease community and how can we encourage different voices?

Here’s the Storify of our discussion.

@drpauldempsey 20 years ago, my story didn’t matter, I was told what to do. I love the change now since I’m asked what I need next. #hcsmca

— Martin R. Lemieux (@martin_lemieux) February 3, 2016

CT Seek out stories that on the surface are not similar to our own and then look for the connections and commonalities #hcsmca

— Pam Ressler (@pamressler) February 3, 2016

@hcsmca Ct: I want everyone in the rare community to have a voice, to have a place at the table. We are stronger together. #hcsmca

— Tattered Edge (@tatterededge) February 3, 2016

Read the complete #hcsmca chat 250 transcript.