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- EIN 20-3068945
- info@congenitalhi.org
- (973) 566-0334
- Po Box 135 Glen Ridge NJ 07028-0135 USA
- www.congenitalhi.org
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Nonprofit Overview
Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Health
Mission: Congenital hyperinsulinism international (chi) is dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism. 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 neurological outcomes. Undiagnosed hyperinsulinism leads to brain damage and death. Chi supports research and development for better understanding of the condition, leading to a better quality of life, better treatments and management of the condition, and ultimately, a cure.
Programs: Chi provides educational resources on congenital hyperinsulism to patients, families, medical professionals, school personnel, and any other interested parties. Chi also organizes conferences and meetings for patient, patient family populations, and interested medical personnel. $37,674
chi increases awareness of congenital hyperinsulinism in order to improve timely diagnosis, especially among medical personnel who have a direct opportunity to detect it, in order to decrease adverse neurological outcomes and death. Chi works with volunteers around the world to spread awareness of the condition, distributes brochures to medical professionals, provides information on the chi website about the dangers of prolonged hypoglycemia, holds events for the general public, and works with endocrinologists to improve standards of care and early detection of hyperinsulinism. $13,217
chi supports research and development to better understand, treat, manage and hopefully cure congenital hyperinsulinism. Chi shares the patient perspective with researchers, members of the pharmaceutical industry to encourage patient-centered treatments. Chi has created a grant program with the orphan disease center of penn medicine (university of pennsylvania). The selective grant is administered by the university of pennsylvania and the funds support research for better treatments and a cure for hyperinsulinism. Chi is working to develop a patient registry that will include information that will foster research and knowledge of natural history of hyperinsulinism patients. $24,650