CONGENITAL HYPERINSULINISM INTERNATIONAL
PO BOX 135, GLEN RIDGE, NJ 07028 www.congenitalhi.org

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Organizations Filed Purposes: CHI is dedicated to improving the lives of babies, children, and adults affected by HI. CHI provides education, information and support to families of diagnosed children and adults living with the condition. CHI works to promote knowledge and awareness of the disorder as it leads to timely diagnosis and decreases death and brain damage, better care and better neurological outcomes. CHI supports research and development for a better understanding of the condition, leading to a better quality of life, better treatments and management of the condition, and ultimately, a cure.

Congenital Hyperinsulinism International (CHI) is the leading patient organization dedicated to improving the lives of people with hyperinsulinism (HI). HI is a life-threatening disorder that causes dangerously low blood sugar levels due to the over-production of insulin.

CHI supports research and development to better understand, treat, manage and hopefully cure HI. CHI shares the patient perspective with researchers, members of the biopharmaceutical industry to accelerate the development of patient-centered treatments. 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 also administers a one-time hyperinsulinism hyperammonemia(HIHA) pilot grant for an innovative, preclinical study that has the potential to lead to a better HIHA treatment, a cure for HIHA, or improved quality of life to those affected by HIHA.CHI conducts the HI Global Registry (HIGR) research project. HIGR provides a convenient online platform for the HI patient community to share their experiences of living with HI. By participating in the HI Global Registry, the patient community helps themselves and researchers better understand HI to advance better treatments, a potential cure, and more timely and accurate diagnoses.

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

CHI increases awareness of HI in order 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 21 languages, CHI brochures, through direct mail and email, and at meetings and conferences. CHI provides educational resources and holds onferences and meetings on HI for patients, families, medical professionals, school personnel,and rare disease industry members.

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