SXSW Interactive 2015
On a Diagnostic Journey
You are sick...you have no idea why...the medical community is stumped...where do you turn...are you left alone?
In this country 30-40% of children with disabilities do not have a diagnosis. We have soldiers coming back with diseases we can't name or treat. People are written off...
As diagnostics, especially genomics, expands we may have answers...BUT, where do patients access this information? Who will be the guide by the side.
With the increasing options in social media and other Internet venues...who should you trust? Where do you turn?
The Undiagnosed Panel will offer resources, allies, and answers for those on the journey...with a keen understanding of health care, diagnostics, and patient care pathways, we can assist in the journey.
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Takeaways
- How do I find support on the diagnostic journey?
- How do I find a support group online that meets my needs?
- What is being done nationally and internationally for those with undiagnosed and rare disorders?
- If my resources are limited, where are the supported studies and funding?
- Where are we in supporting studies that will help me?
Speakers
- Katia Moritz, Creator, Undiagnosed Film
- Hari Khalsa, Advocate, Heath Care Whisperer
- Vanessa Garcia, Director of Communications for UROH, U.R. Our Hope
Organizer
Mary Elizabeth Parker, Medical Liaison, U.R. Our Hope
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