Medical Mysteries: New Network Will Help Rare Disease Detectives

Medical Mysteries: New Network Will Help Rare Disease Detectives

They baffle even the finest specialists: rare diseases that affect only a handful of people and that are often caused by extremely rare genetic mutations.

Now the National Institutes of Health is setting up a network of research centers where doctors will examine these unlucky patients, test their genetic codes and swap information on what they find. The hope is that by pooling information and patients, doctors can solve these medical mysteries and perhaps also shed light on more common diseases.

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Alpinist Jeff Lowe part of Utah film on undiagnosed disease

Alpinist Jeff Lowe’s legacy extends beyond the world of climbing.

A documentary is being produced about the Ogden native’s resilience in the face of a life-robbing neurological disorder similar to amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. In addition, Lowe will appear in a Utah-made film — "Undiagnosed: Medical Refugees" — about the fear and isolation felt by millions of people worldwide living with undiagnosed diseases.

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