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Archives for: May 11th, 2016

Dr. Arthur Caplan: 2016 Rare Impact Award Honoree

Written by Christina Jensen on May 11, 2016
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When he was six years old, Arthur Caplan came down with polio and was temporarily paralyzed. That episode – which included time at Boston’s Mass General Hospital followed by rehab – “always left me with a patient perspective,” Dr. Caplan says.

That perspective and his tendency… Read More

Dawn Laney: 2016 Rare Impact Award Honoree

Written by Christina Jensen on May 11, 2016
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A leading expert in her field, Dawn Laney, M.S., C.G.C., C.C.R.C. is a genetic counselor, instructor, and program leader at Emory University in the Department of Human Genetics.  She manages Emory’s infusion center and lysosome storage disease clinical research, and is a sought-after specialist in Fabry Disease, a… Read More

Debra Miller: 2016 Rare Impact Awards Honoree

Written by Christina Jensen on May 11, 2016
Debra Miller

Debra Miller co-founded CureDuchenne in 2003 with her husband, Paul, after their only son was diagnosed with Duchenne Muscular Dystrophy. With a background in sales and marketing, she leads CureDuchenne and has funded seven research projects that have advanced to human clinical trials, three of which are the… Read More

Desiree Lyon Howe: 2016 Rare Impact Award Honoree

Written by Christina Jensen on May 11, 2016
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Desiree Lyon Howe lived for 10 years in excruciating pain before being diagnosed with Acute Intermittent Porphyria (AIP). She was finally diagnosed at the National Institutes of Health where what would become the first therapy approved as orphan drug, Panhematin®, saved her life.  Upon… Read More

Dr. Stephen Cederbaum: 2016 Rare Impact Award Honoree

Written by Christina Jensen on May 5, 2016
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A medical geneticist and expert on inborn errors of metabolism, Stephen Cederbaum, MD, has been affiliated for many years with the University of California, Los Angeles, as a professor, medical researcher and clinician. He has conducted pioneering research, published widely acclaimed papers and advanced understanding of urea cycle… Read More