Congenital Hyperinsulinism International (CHI) Company Profile

Background

Congenital Hyperinsulinism International (CHI) is a U.S.-based nonprofit organization dedicated to improving the lives of individuals affected by congenital hyperinsulinism (HI), a rare disorder characterized by excessive insulin production leading to severe hypoglycemia. Founded in 2005 by parents of children with HI, CHI's mission encompasses providing support and advocacy for affected individuals and their families, raising awareness to enhance knowledge among medical professionals and the public, and supporting research aimed at advancing diagnostics, treatments, and potential cures for HI.

Key Strategic Focus

CHI's strategic initiatives include:

Collaborative Research Network (CRN): An international collaboration of researchers, clinicians, and patient advocates working to accelerate HI research, aiming for faster and more accurate diagnoses, development of evidence-based treatments and cures, standardization of clinical guidelines, and improved access to care.

HI Global Registry (HIGR): A patient and physician-reported natural history study consisting of surveys that capture various aspects of the HI experience over a lifetime. This data is anonymized and shared with researchers to enhance understanding and drive advancements in treatment and patient care.

Centers of Excellence Program: Designates leading HI centers that provide top-tier multidisciplinary care and demonstrate ongoing commitment to research and collaboration.

Open Hyperinsulinism Genes Project: In partnership with the University of Exeter, this program offers international genetic testing services for HI, accelerating scientific knowledge through a self-sustaining gene discovery pipeline.

Financials and Funding

CHI operates as a nonprofit 501(c)(3) organization, relying on donations, grants, and fundraising activities to support its programs. Financial data indicates a steady increase in revenue and net assets over recent years, reflecting effective fundraising and financial management.

Pipeline Development

While CHI does not develop medical treatments directly, it plays a pivotal role in facilitating research and development through:

Research Grants: Partnering with institutions like the University of Pennsylvania's Center for Orphan Diseases to fund innovative clinical or pre-clinical studies aimed at improving HI treatments and understanding.

Data Contribution: Providing de-identified data from HIGR to researchers, supporting the development of new treatments and clinical guidelines.

Technological Platform and Innovation

CHI leverages several platforms to advance HI research and patient support:

HI Global Registry (HIGR): A comprehensive, multilingual online platform collecting patient and physician-reported data to inform research and improve patient care.

Open Hyperinsulinism Genes Project: Offers international genetic testing services, contributing to a research gene discovery pipeline that enhances scientific understanding of HI.

Leadership Team

Julie Raskin: Chief Executive Officer. As a co-founder of CHI, Julie has been instrumental in leading the organization's strategic initiatives and fostering collaborations to advance HI research and support.

Laura Sullivan: Board Chair. Laura provides leadership and governance oversight, guiding CHI's mission and strategic direction.

Leadership Changes

As of February 15, 2024, Laura Sullivan serves as the Board Chair, with her term spanning from 2024 to 2026.

Competitor Profile

Market Insights and Dynamics

The congenital hyperinsulinism treatment market is projected to reach approximately $179.08 million by 2033, growing at a CAGR of 6%. This growth is driven by increasing awareness, early diagnosis, and advancements in personalized treatments.

Competitor Analysis

Key players in the congenital hyperinsulinism treatment market include:

Eli Lilly

Novo Nordisk

Novartis AG

Rezolute, Inc.

Eiger BioPharmaceuticals

Zealand Pharma A/S

Hanmi Pharmaceutical Co., Ltd.

Crinetics Pharmaceuticals, Inc.

AmideBio LLC

Xeris Pharmaceuticals, Inc.

These companies focus on developing and commercializing treatments for HI, contributing to the competitive landscape.

Strategic Collaborations and Partnerships

CHI has established significant collaborations to enhance its impact:

University of Exeter: Partnered to fund the Open Hyperinsulinism Genes Project, providing international genetic testing services and advancing gene discovery research.

University of Pennsylvania's Center for Orphan Diseases: Collaborates on the Million Dollar Bike Ride grant program, funding innovative research studies with potential benefits for HI patients.

Operational Insights

CHI's strategic initiatives, such as the CRN and HIGR, position the organization as a central hub for HI research and patient support. By fostering collaborations among researchers, clinicians, and patient advocates, CHI enhances the collective understanding of HI and drives the development of improved treatments and care strategies.