Rare diseases focus of events at Utah Capitol and the U.

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Utah Rare, a group seeking more awareness of rare and undiagnosed diseases, is hosting an event Friday at the Capitol and a day-long Saturday symposium to mark Rare Disease Day.

Dean Li, chief scientific officer for University of Utah Health Sciences, will be the opening speaker at a 3-5 p.m. event in the Capitol Rotunda. Legislators, advocates, parents of children with rare diseases and others will speak.

On Saturday, a Rare Disease Day symposium is planned from noon to 5 p.m. at the University of Utah Health Sciences Education Building.

Cristina Might, Utah Rare chairman for 2015 and mother of a child with a rare disease, said "We hope our events inspire communication and coordinated action. It's time that we do what Utahns do: care, help and give."

Her 7-year-old son, Bertrand Might, was the first person diagnosed with N-glycanese deficiency (NGLY1), and his story has been chronicled locally and nationally.