Tuesday March 12th, 2019
by Julie Raskin
Comments Off on Rare Disease Day in the Garden State
New Jersey is often referred to as the “Medicine Cabinet of the World” because many of the leading global pharmaceutical companies are headquartered in New Jersey. Yesterday, New Jersey was also a world hub for rare disease patient advocacy. On … Continue reading
Saturday December 22nd, 2018
by Julie Raskin
Comments Off on A Diazoxide Shortage In India
As many of us are planning to gather with family and friends for holiday celebrations, there are families in India who will run out of the lifesaving medicine they need for their children. There is a shortage of Eudemine (diazoxide) … Continue reading
Monday September 17th, 2018
by Julie Raskin
Comments Off on CHI Roller Coaster
Last Saturday was CHI Roller Coaster Day at Luna Park and it was a blast! It was a summery gorgeous day on the shores of the Atlantic Ocean. Luna Park is in Coney Island, Brooklyn right next to the beach, … Continue reading
Monday July 30th, 2018
by Julie Raskin
Comments Off on A Texas Welcome for the #CHIFAM2018 Conference
The 2018 Congenital Hyperinsulinism Family Conference in Fort Worth, Texas organized by Cook Children’s and Congenital Hyperinsulinism International (CHI) took place over last weekend, July 27-29. 150 people gathered including kids with HI, their siblings, parents, physicians, researchers, and members … Continue reading
Tuesday July 10th, 2018
by Julie Raskin
Comments Off on A Chance to Take a Breath
HI Mom Sara Bernstein stars in this short video about what it is like to be the parent of a child with hyperinsulinism (HI). In “Sugar Baby” she shares scenes from her life, taking care of her children and the … Continue reading