The following was shared by CHI Development Director Pam Weber-Leaf: CHI had a chance to raise hyperinsulinism (HI) awareness and connect with our peers in the rare disease space all over the Northeast corridor of the United States last month as part of international Rare Disease Day (RDD) 2026 observances. On Feb. 20, I had … Read more
I attended the National Organization for Rare Disorders Breakthrough Summit in Washington DC last week. The focus of this year’s Summit was “Equitable Access to Innovation.” It was fantastic to spend time learning from and connecting with people linked by a shared passion to make the world better for the millions of people living with … Read more
Dear CHI Friends, I am writing to tell you about an excellent opportunity to spread awareness about HI and to share your opinions about the importance of information sharing for taking care of yourself or a child with HI. The attached electronic survey which is being conducted by NORD, the National Organization of Rare Diseases, … Read more
In November, CHI (Congenital Hyperinsulinism International) qualified for membership to NORD, The National Organization for Rare Diseases. “This is really good news for CHI,” said Isabel Calderon the CHI Board of Directors liaison to NORD. “With this membership, CHI will be able to benefit from NORD’s many resources and services.” Prior to the creation of … Read more