Although most readers of this blog do not live in the Raleigh-Durham Metro of North Carolina, I did want to dedicate a post to promoting the upcoming gathering of the The Joe Niekro Foundation Brain Aneurysm Support Group at Duke Raleigh Hospital. The meeting is this Monday evening, November 21 at 6pm. The topic is “The Power of the e-Patient: Social Media Patient Advocacy Presentation.”
I’m blogging about this because the topic is extremely relevant and they have two terrific speakers lined up. Laura Haywood-Cory and Sarah E. Kucharski are social media pioneers and patient advocates for their rare diseases. When Laura suffered a heart attack identified as SCAD and Sarah learned that she suffers from FMD, they both discovered that very little is known of their conditions. Using social networking sites, both women have established online support groups and furthered medical research for their diseases. They have been recognized for their success in supporting their own health as well as the health of patients throughout the world with SCAD and FMD. I met Laura Haywood-Cory at the recent Mayo Ragan conference in Rochester, Minnesota, and she has an amazing story to tell! I have been following Sarah on Twitter for some time, and look forward to hearing her story.
I plan to attend the meeting and lend my support – tweeting and blogging as time permits. I invite you to join us to hear how Laura Haywood-Cory and Sarah Kucharski located and empowered SCAD and FMD patients. Learn how they organized self-identified volunteers, enabling physicians to conduct research on their diseases. Special thanks to Janie Schaeffer for organizing the meeting! Janie and I met at the 2011 Mayo Ragan Healthcare Social Media Summit. She is a board member of the Joe Niekro Foundation, a group committed to aiding in the research and treatment of aneurysm patients and families.
- Event: The Power of the e-Patient
Social Media Patient Advocacy Presentation
- Presenters: Laura Haywood-Cory (@LauraGHC) and Sarah E. Kucharski (@AfternoonNapper)
- Sponsored by Duke Hospital and Joe Niekro Foundation
- November 21, 2011 at 6:00
- Duke Hospital Raleigh
- Please rsvp to Janie Schaeffer firstname.lastname@example.org
For more information Monday night’s event, go to: http://hosted-p0.vresp.com/1003209/79c6dd68b5/ARCHIVE#like. For more about the Joe Niekro Foundation, go to http://joeniekrofoundation.com/.