PLATINUM2024

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

Chief Executive Officer

Julie Raskin

Main address

PO Box 135

Glen Ridge, NJ 07028 USA

Show more contact info

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

SOURCE: Self-reported by organization

Congenital Hyperinsulinism (HI) is a rare disease and the most frequent cause of severe, persistent hypoglycemia in newborn babies and children. HI occurs in approximately 1/28,000 births in most countries. About 60% of babies with HI develop hypoglycemia during the first month of life. An additional 30% will be diagnosed later in the first year and the remainder after that. With early treatment and aggressive prevention of hypoglycemia, brain damage can be prevented. However, brain damage can occur in children with HI if their condition is not recognized or if treatment is ineffective in the prevention of hypoglycemia. CHI works to create awareness, provide support, and advance research to improve the lives of those impacted by congenital hyperinsulinism and other rare hypoglycemia disorders globally. Together with our international partners, CHI dares to imagine a cure and a world without brain damage and death due to hypoglycemia.

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 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.

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.

Population(s) Served

Congenital Hyperinsulinism International has partnered with researchers at the University of Exeter to fund the Open Hyperinsulinism Genes Project, an international genetic testing program. As a part of our joint initiative, CHI covers the costs of genetic testing for individuals who would otherwise be unable to receive genetic screening, regardless of their location in the world. This partnership is helping to ensure that there are no barriers for individuals diagnosed with this condition.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of HI Global Registry participants.

This metric is no longer tracked.
Totals By Year
Related Program

HI Global Registry

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of research papers published.

This metric is no longer tracked.
Totals By Year
Related Program

Congenital Hyperinsulinism Awareness

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of participants attending course/session/workshop

This metric is no longer tracked.
Totals By Year
Related Program

Congenital Hyperinsulinism Conferences

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Congenital Hyperinsulinism International's goal are to ensure:
Universal newborn screenings so that no infant dies or suffers preventable neurological damage from congenital hyperinsulinism.

Expanded global access to existing diagnostic tools and treatment.

Convenient and accurate ways to accurately measure blood sugar levels.

Providing support to congenital hyperinsulinism families around the world.

Facilitating a patient-led collaborative research network.

Providing patient-powered research and support for the development of cures and effective treatments that do not have serious side effects for all individuals with congenital hyperinsulinism.

Raising awareness of congenital hyperinsulinism to ensure all relevant medical professionals have the knowledge they need to diagnose and treat their patients with this condition.

The designation of Congenital Hyperinsulinism Centers of Excellence provides HI families with a roadmap for where to get expert multidisciplinary care for their children.

An ever-growing robust patient registry that: tracks the experience of living with congenital hyperinsulinism throughout life from the patient and caregiver perspective; includes evidence of the effects of living with congenital hyperinsulinism and its consequences; includes physician-reported information and medical records to complement the patient-reported information; is linked to a biorepository; is a continually evolving major source of knowledge for researchers around the world.

CHI has:
Built an international HI patient community of over 2,000 people, connecting families across borders, removing barriers, & helping to alleviate devastating isolation.

Consulted on, distributed & encouraged the adoption of the Pediatric Endocrine Society Hypoglycemia Guidelines.

Established an HI Global Registry as a critical research tool serving as a foundation for an HI Natural History Study reported by those who live with the disease.

Produced & managed 31 International Conferences in 9 countries for medical professionals, clinicians, scientists, researchers, drug companies & families, accelerating the pace of shared knowledge & information.

Invested $700,000 & 10 pilot research grants to help better understand the causes & possible treatments & therapies for HI.

Partnered with researchers at the University of Exeter to fund the Open Hyperinsulinism Genes Project, an international genetic testing program that has completed tests for 894 individuals from 61 countries on 5 continents who would otherwise have been unable to receive it.

Designed & implemented the first-ever Centers of Excellence Program for HI that has awarded six medical institutions with this designation for delivering the highest levels of multi-disciplinary care to HI patients & their families, as well as ongoing commitments to research & collaboration.

Formed a Collaborative Research Network (CRN) to fill gaps in research & advocacy. It is comprised of patient advocates, family members, physicians, researchers, clinicians, & patient organizations from 18 countries to accelerate research & cures for HI. Since 2020, CRN members have published 194 articles on HI in the areas of genetics, treatment & management, monitoring & technology, screening & diagnostics, guidelines & education, patient experience & quality of life, & policy & access, including the first International Guidelines for the Diagnosis and Management of Hyperinsulinism. Convening this level of expertise has already resulted in additional collaboration, including an HI nurses working group, and an increased focus in the community for newborn screening and CGM use.

Actively informs the patient community about clinical research opportunities (researchers always need patient participation) without endorsing specific studies and encouraging physician and healthcare provider approval in advance of such participation.

Developed critical partnerships with prominent healthcare and industry leaders in biotechnology and pharmaceuticals to help advance research, studies, and /or clinical trials for new HI treatments.

Identified, aggregated, wrote, and distributed critical content to the community, including peer-reviewed publications, data from its HI Global Registry, and new knowledge from its combined networks.

Produced a Patient/Family Resource Tool Kit on its website to help families cope with daily life while awaiting new therapies and treatments.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

Financials

CONGENITAL HYPERINSULINISM INTERNATIONAL
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Operations

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

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

CONGENITAL HYPERINSULINISM INTERNATIONAL

Board of directors
as of 02/15/2024
SOURCE: Self-reported by organization
Board chair

Laura Sullivan

no affilitation

Term: 2024 - 2026

Julie Sheldon

Mason Smith

Erin Greaves

Pam Williams

Sheila Bose

Trudy Ward

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/13/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

No data