CONGENITAL HYPERINSULINISM INTERNATIONAL

CHI launched the CHI Centers of Excellence designation application process to recognize
multi-disciplinary clinical and research centers in the field of congenital hyperinsulinism. In 2021, six centers were granted the designation. This program aims to make it easier for patient families to access care at leading hospitals, encourage patient-focused standards at the leading hospitals, foster a pipeline of expert clinicians and researchers, and encourage collaboration among researchers, clinicians, and patient leaders and advocates.

CHI launched the Collaborative Research Network to create a prioritized research agenda for the development of faster and more accurate diagnoses, new evidence-based treatments and cures, standardized clinical guidelines, and increased and improved access to treatment, medication, devices, and supplies. This ambitious project includes seven working groups focused on different aspects of the agenda, comprised of 57 leading researchers, clinicians, and patient advocates from 16 countries.

CHI is part of the Million Dollar Bike Ride grant program with the University of Pennsylvania's Center for Orphan Diseases; a pilot research grant is offered each year for an innovative, preclinical or clinical study with the potential to lead to a better HI treatment, a cure for HI, or improvement in the quality of life for those affected by HI.

CHI increases awareness of HI to improve timely diagnosis, among the public and medical personnel who have a direct opportunity to detect it, to decrease adverse neurological outcomes and death. To that end, CHI spreads awareness of HI with ongoing campaigns on social media, the CHI website and blog, CHI posters in 23 languages, CHI brochures, through direct mail and email, and at meetings and conferences. CHI provides educational resources and holds conferences and meetings on HI for patients, families, medical professionals, school personnel, and rare disease industry members.

CHI hosts two international conferences each year that are open to the entire (HI) community including patients, families, medical professionals, school personnel, and rare disease industry members. Usually, one is in the United States and one is in Europe but they are open to anyone with HI living anywhere in the world. In 2020 and 2021, we have held these conferences virtually.

CHI covers the cost of genetic testing for HI for any patient suspected of having congenital hyperinsulinism who otherwise cannot afford genetic testing. The testing is conducted by a leading genetics lab at the University of Exeter in the UK.