Congenital Hyperinsulinism International

CHI increases awareness of HI to improve timely diagnosis and guideline-driven management of HI to the public and medical personnel who have a direct opportunity to detect it, in order 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 25 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. To date, CHI has held 35 family and research meetings and conferences with presentations from academic researchers, members of advocacy organizations, HI patients and families, and biotechnology companies.

CHI advocates on behalf of HI families all over the world for access to quality treatment, medication, and supplies. CHI provides opportunities for affected families to emotionally support each other because the home care medical management of HI is often complicated and difficult. CHI offers online forums, and CHI staff and volunteers are available by telephone, virtually and in-person for support. CHI establishes funds at hospitals to support families from out of town who must travel to centers of excellence for patient care.