The 2023 Sugar Soirée

Mark your calendars: the 2023 Sugar Soirée is on November 4, 2023! It will occur in the evening at the Montclair Art Museum in Montclair, NJ. We are so excited to gather with the CHI community and to celebrate and raise funds to improve the lives of children and adults born with congenital hyperinsulinism and their families.

A room block has been set aside for our Sugar Soirée guests at the special rate of $229.00 per night at the MC Hotel, 690 Bloomfield Ave in Montclair, located a few blocks from the Montclair Art Museum. Book your group rate for Congenital HI Sugar Soiree Room Block before October 3, 2023.

You can learn more about this year’s Be My Sugar Awardees, event details and purchase tickets here.

If you cannot attend this year’s Sugar Soirée, but would like to make a donation, you can donate here.

Are you ready to help bring HI research to the “Max?” You can participate in MaxHIGR, a physician-reported addition to the HI Global Registry (HIGR)! Thanks to HIGR, the experience of living with congenital hyperinsulinism (HI), from the people who live with it, is included in medical research for new treatments and cures.

Now, you can maximize your participation in HIGR through MaxHIGR. MaxHIGR, an international collaboration between HI physicians and CHI, will grow and expand the research possibilities unlocked through HIGR while enhancing the impact of the registry’s 13 patient and caregiver surveys. MaxHIGR adds physician-reported information through the MaxHIGR form. Your doctor can complete the form that will provide key information about your HI from the medical perspective. The form will then be uploaded into the secure registry platform.

Together, HIGR and MaxHIGR will lead to faster diagnostics, better quality of life, better treatments, and maybe even a cure. Learn more about MaxHIGR and the benefits of participating here.

If you are the parent of a child with hyperinsulinism, you can participate in their behalf. If you are an adult with hyperinsulinism, you can participate for yourself.

2023 HI-lights of the Year

Check out the first edition of CHI’s 2023’s HI-Lights – Congenital Hyperinsulinism International quarterly newsletter to celebrate our HI community and update you on events, projects, and other exciting developments in the world of HI.

The first half of 2023 has flown by for our CHI community – so let’s look at what we’ve accomplished and what we look forward to in the future.

View the 2022 HI-lights of the Year here.

The 2022 HIGR Annual Report is here!

CHI and the HI Global Registry (HIGR) team invite you to read the 2022 HIGR Annual Report! The report provides insights into what it is like to have congenital hyperinsulinism (HI) reported by the people who live with it. HIGR is the first global patient-powered congenital hyperinsulinism patient registry and consists of a series of thirteen surveys made up of questions related to a patient’s HI experience over their lifetime. The report builds on previous annual reports that have been shared since 2019. Learn more about the HI Global Registry.

If you have any questions or feedback about the report or HIGR, please contact: info@higlobalregistry.org.

Recent Published Articles

Global Registries in Congenital Hyperinsulinism

This article characterizes HI through the experience of individuals who live with it. It includes descriptive statistics on the birthing experience, hospitalizations, medication management, feeding challenges, experiences with glucose monitoring devices, and the overall disease burden to provide insights into the current data in the HI Global Registry (HIGR) and demonstrate the potential areas of future research.

Click here to read the article.

Congenital Hyperinsulinism International: A Community Focused on Improving the Lives of People Living With Congenital Hyperinsulinism

This article describes the current challenges of living with HI including diagnosis and disease management told from the perspective of people who live with the condition, shares family stories of life with HI, and how Congenital Hyperinsulinism International is working to improve the lives of HI patients and their families.

Click here to read the article.

Article on Congenital Hyperinsulinism in Infancy and Childhood

For the first time in the medical literature, the perspective of families and patients with congenital hyperinsulinism is published together with insights from clinical experts. In this publication, the authors Indraneel Banerjee, Julie Raskin, Jean‑Baptiste Arnoux, Diva D. De Leon, Stuart A. Weinzimer, Mette Hammer, David M. Kendall and Paul S. Thornton, present the key clinical challenges and unmet needs, infused with knowledge from the patient and family perspective on daily life with congenital hyperinsulinism.

Read the article here.

CHI receives a Global Genes 2022 Rare Meet Up grant. Click here to read the press release about this grant award.

CHI announces first group designated as Centers of Excellence

CHI Center of Excellence

The Congenital Hyperinsulinism International (CHI) Hyperinsulinism Centers of Excellence (COE) Program designates centers for providing the highest quality of care for congenital hyperinsulinism (HI) patients and their families around the world.

In June 2021, the first group of centers received the COE designation. This honor recognizes expert centers that provide the highest level of multi-disciplinary care to congenital hyperinsulinism patients and their families and an on-going commitment to research and collaboration.

The CHI COEs are:

Congenital Hyperinsulinism Center at the Children’s Hospital of Philadelphia, PA, United States
The Hyperinsulinism Center at Cook Children’s Medical Center in Fort Worth, TX, United States
Great Ormond Street Hospital Congenital Hyperinsulinism Service in London, in the United Kingdom
Charite-Universitatsmedizin Berlin and the University Children’s Hospital Duesseldorf partnership in Germany
Collaborative Alliance on Congenital Hyperinsulinism headquartered in Magdeburg, Germany
Northern Congenital Hyperinsulinism Service in Manchester and Liverpool, in the United Kingdom

Read the full press release here, and click here to read more on the COE Program.

Press release also available in German here.

CHI Collaborative Research Network

A collaborative research network (CRN) is a network of patients and families, physicians, researchers, and patient organizations working together to accelerate research and cures for a particular disease. The CHI CRN builds on the work and momentum of the research done by many experts around the world and our own patient-powered research through the HI Global Registry. The CHI CRN will continue to build on existing projects by forming new partnerships to increase collaboration across institutions and organizations.

Click here to read more about the CHI Collaborative Research Network.

Click here to view the CHI Collaborative Research Network Council Members.

You can follow the progress of the CHI Collaborative Research Network by filling out this form.

CHI receives a Rare As One Network Grant

Congenital Hyperinsulinism International is thrilled and humbled to announce that we are one of 30 rare disease organizations to receive a Rare As One Network grant of $450,000, distributed over two years, from the Chan Zuckerberg Initiative. This grant will allow us to work with the patient and scientific community to create a patient-led sustainable, lasting structure to prioritize and execute an international research agenda to better understand congenital hyperinsulinism (HI), identify new ways to improve the lives of those living with HI, reduce the incidence of irreversible brain damage, detect the genetic causes of HI types not currently known; and to find cures for each and every type of HI. Over the next few months we will learn much more about the resources available to build the network. We will be in contact with our CHI family partners and the scientific and medical community about collaborating on this exciting project.