Julie Raskin Rare Disease Day is just around the corner and it is a great day to devote to the knowledge of rare disorders in general, and congenital hyperinsulinism (HI), in particular. With the creation of this day, NORD and EURORDIS have done a fantastic job building a public awareness campaign about rare diseases. It is incumbent … Read more
10 Reasons Why You Should Make a Year End Gift to CHI • We all have to “care about rare.” It is really up to us to make our voices heard and support our rare disease community. If we don’t, who will? • CHI supports families living with HI through sponsorship of conferences and informative … Read more
CHI and CHOP are very busy making arrangements for the Fourth Congenital Hyperinsulinism Family Conference, being held March 17 and 18 in Philadelphia at CHOP. I’m thrilled to say we have a great line-up of presentations. We have many congenital hyperinsulinism (HI) experts from the professional world coming from around the U.S. and overseas to … Read more
Congenital Hyperinsulinism International (CHI) is happy to announce that our new brochure on congenital hyperinsulinism (HI) is hot off the presses and ready to be distributed. In the brochure we describe the disorder, explain what CHI is all about, and suggest ways for all HI families to get involved in raising HI awareness, HI advocacy, … Read more
The CHI Patient Champions, Amy Sommers, Pam Williams, and Randy Hart came over for lunch last Friday. These three wonderful women are amazing resources for all parents bringing up children with congenital hyperinsulinism (HI). Their contact information is included at the bottom of this post. Here’s a little bit about our visit and our collective … Read more