Invisible to you

By Arunabh Satpathy

Katia Moritz, has been undiagnosed for a long time. The director of the documentary Undiagnosed was motivated by her own illness and those of people like her. She was joined on a panel by Tristan Orpin, EVP of Clinical Genomics, Illumina, John Ryals, CEO of Metabolon, and Robin Y. Smith, CEO of ORIG3N. The session hosted by Doug Jamison, CEO of the Harris & Harris Group.

Upon introducing the panel, Sharon Anderson Morris spoke of “medical refugees” of undiagnosed diseases. The panel started with a clip of the film “Undiagnosed,” displaying the problems with people who have medically unexplained symptoms, and how they are often not treated for medical symptoms.

However, the documentary has quickly led to the formation of the UnDx, a consortium of five tech companies with providers and patients brought together by Moritz.

Moritz spoke of her personal story, and how she was working to give voice to the undiagnosed. She also spoke of the tragedy of not getting valuable data from people who the medical system refuses to treat and could offer something to the world.  

She got in touch with Dr. Isaac Kohani at Harvard and put together a database of undiagnosed.

The companies’ offered their respective products, including genome sequencing by Illumina.

With the gathered data and tech, they decided to continue looking for answers for families.

Moritz also spoke with Jamison, who put her in touch with 5 biotech companies who set up the UnDx Consortium.
“For the first time, all these companies who are working in different areas of biotechonology are working together,” he said.  

A big emphasis of the panel was on the fact that patients, providers, and companies were working together.

The prevailing theme was “new technologies plus collaboration equals hope.”

Taft spoke of his personal experience with a child of a friend with a family being undiagnosed.

There was further discussion of inflection points, including the fact that ,any patients were not diagnosed for five to eight years, and many would never be diagnosed.

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