CONGENITAL HYPERINSULINISM INTERNATIONAL

When too little sugar hurts, we help.

aka CHI   |   Glen Ridge, NJ   |  http://www.congenitalhi.org

Mission

CHI is a leading international nonprofit dedicated to improving the lives of children and adults living with congenital hyperinsulinism (HI). 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.

Ruling year info

2006

Executive Director

Julie Raskin

Main address

PO Box 135

Glen Ridge, NJ 07028 USA

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EIN

20-3068945

NTEE code info

Alliance/Advocacy Organizations (G01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

HI Global Registry

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.

Population(s) Served

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.

Population(s) Served

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.

Population(s) Served

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.

Population(s) Served

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.

Population(s) Served

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.

Population(s) Served

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.

Population(s) Served

Where we work

Financials

CONGENITAL HYPERINSULINISM INTERNATIONAL
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Operations

The people, governance practices, and partners that make the organization tick.

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CONGENITAL HYPERINSULINISM INTERNATIONAL

Board of directors
as of 1/18/2022
SOURCE: Self-reported by organization
Board chair

Sheila Bose

no affilitation

Term: 2021 - 2023

Julie Sheldon

Mason Smith

Erin Greaves

Turaya Kamau

Pam Williams

Organizational demographics

SOURCE: Self-reported; last updated 08/27/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Decline to state
Gender identity
Female

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data