Last Monday, March 4, Congenital Hyperinsulinism International and thirteen other patient organizations presented a program aimed at raising awareness in the state of New Jersey of the plight of people living with rare diseases.  NORD and BioNJ, the Biotech trade organization for New Jersey, supported our efforts to deliver this presentation which took place at … Read more

On February 28, 2013, Congenital Hyperinsulinism International held its second “rare” event in honor of the 6th Rare Disease Day in Montclair, New Jersey at the historic and beautiful Van Vleck House.  The purpose of “A Very Special Cocktail Party” was threefold: to raise awareness of the needs of all rare disease patients, to share … Read more

Julie Raskin:  CHI is thrilled to learn that you have been given an endowed chair at Cook Children’s. This is very exciting and a great step forward for the whole field. Congratulations! What will this mean for your work and the future of the Cook Children’s Hyperinsulinism Center? Paul Thornton:  Yes, this is a very … Read more

As parents of children with congenital hyperinsulinism (HI), we often suffer heartbreak and loss. There is so much to mourn: parents of babies diagnosed at birth never get to experience the normal joys and normal anxieties of caring for a newborn. Those whose babies are diagnosed after several months never return to the innocent phase … Read more

The FDA has granted orphan drug status to Biodel’s stable glucagon for congenital hyperinsulinism patients. This represents one more important milestone in the development of this drug for HI patients. This FDA designation creates a range of financial incentives for the further development of the drug. Earlier this year, Biodel had received orphan drug designation … Read more