epatient patient communities Patient Empowerment

The Power of the e-Patient: Monday, Nov 21

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 janie@joeniekrofoundation.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/.

4 comments on “The Power of the e-Patient: Monday, Nov 21

  1. Thanks so much for announcing our meeting Dan! We are so excited and honored to have Laura and Sarah share their stories. As brain aneurysm survivors, we know what a tremendous experience it is to connect with fellow survivors. We’re looking forward to learning everything we can from Laura and Sarah.

    Anyone interested in becoming a more effective ePatient is welcome!


  2. I’m really hoping that we have some attendees from around the RTP area—it’s my old stomping grounds. Those who can’t make it should look for your tweets and follow @LauraGHC @raleighite and @AfternoonNapper too!

  3. I am sure tonight was an amazing meeting and I know that anyone that attended took away so much knowledge and information. Janie, thank you for pulling it all together and to our speakers…Thank you for supporting our cause. Please share your feedback of tonight’s meeting by posting your comments on Facebook!
    Natalie Niekro

  4. Pingback: A Day Dedicated to ePatients | The Healthcare Marketer

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