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SXSW Interactive 2014

On a Diagnostic Journey

Navigating the healthcare system when the diagnosis is not clear is a daunting process. Individuals with undiagnosed disorders lack identity and are often isolated and forgotten. This panel will provide resources to assist those with undiagnosed disorders in finding answers through advocacy and collaboration. On the panel are both individuals who know the undiagnosed journey, and those whose mission it is to guide and advocate for them.

Utilizing social media, Skype, online support groups, blogs, and radio blog shows the panel members have been able to reach out "without walls" to help the undiagnosed community.

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  1. What does it mean to be undiagnosed?
  2. How can social media and other online resources assist in the diagnostic journey?
  3. Who can help negotiate with the medical networks and third party payers?
  4. Where are the major research programs?
  5. Am I alone on this journey?



Mary Elizabeth Parker, Medical Liaison, U.R. Our Hope

Meta Information:

  • Tags: advocacy
  • Event: Interactive
  • Format: Panel
  • Track: Health and Medicine
  • Track 2
  • Level: Intermediate
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