- Preparing for #RareDiseaseDay 2016
- — Care To The People (@caretothepeople)Wed, Feb 03 2016 18:26:43Storytelling is innately human & can't be separated from medicine. #hcsmca https://twitter.com/martin_lemieux/status/694949570997047296 …
- — Marie Ennis-O'Connor (@JBBC)Wed, Feb 03 2016 18:20:29Story is like gravity: a field of force that surrounds us But, like gravity, we are hardly aware of how it shapes our lives #hcsmca
- 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?
Getting set to chat
- — Colleen Young (@colleen_young)Wed, Feb 03 2016 13:21:37
- — RareDiseaseFdn (@rarediseasefdn)Wed, Feb 03 2016 18:03:21Join in #raredisease community. Tweetchat on #raredisease and storytelling going on NOW! #hcsmca https://twitter.com/seastarbatita/status/694944084700569602 …
- — Stephanie Fischer (@RarePOV)Wed, Feb 03 2016 18:05:30Crashing #hcsmca tweetchat on importance of storytelling in #raredisease w/ @blumencasey . Join if you are available https://cyhealthcommunications.wordpress.com/2016/01/28/preparing-for-rarediseaseday-do-stories-change-anything/ …
Some introductions from around the world
- — Emma Rooney (@blumencasey)Wed, Feb 03 2016 18:04:08I’m Emma, a Rare Disease Patient/Advocate and I love stories. I'm moderating today's chat from Germany. Who else is here? #hcsmca
- Storytelling theme generates great interest
- — Stroke Tattler (@Stroketattler)Wed, Feb 03 2016 18:03:02
- — Isabel Jordan (@seastarbatita)Wed, Feb 03 2016 18:02:35
- — Martin R. Lemieux (@martin_lemieux)Wed, Feb 03 2016 18:03:36
- — christina mutena (@cmutena)Wed, Feb 03 2016 18:06:26@blumencasey I'm Christine .. A rare disease advocate and a mother to two kids with different rare diseases. Listening from Nairobi, Kenya
Do stories change anything?
byEmma Rooney123 Views