Congenital Hyperinsulinism International

The 2021 Sugar Soirée

2021 CHI Sugar Soiree

The 2021 Sugar Soirée

The CHI 2021 Sugar Soirée took place virtually on Saturday, November 13, 2021. The event allowed people to join us in celebrating the congenital hyperinsulinism community and the resounding accomplishments and achievements of the year.

Click here to read more about the event.

Join our mailing list to make sure you get updates on future CHI events!

View the 2021 Sugar Soirée Program here.

If you registered for the 2021 Virtual Sugar Soirée, you can still log in and view information here:

HI Global Registry 2021 Annual Report Now Available

HIGR 3rd Report 2021

The HI Global Registry 2021 Annual Report provides insight into the HI experience as reported by participants of the HI Global Registry (HIGR). 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 analysis and descriptive statistics shared in the report are based on the responses that participants provided from HIGR’s launch in October 2018 through September 2021. This includes individuals living in 46 countries and participants ranging from just a few weeks of age to 60 years old.

The report builds on the previous annual reports released in 2020 and 2019. Additional participation allows for deeper insight into the HI experience, which in time will help provide key data for better diagnostics, HI management, and treatments. We encourage all HI families to join the HI Registry to share your own experience to help provide a more robust and accurate picture of HI.

If you have any questions about the report or HIGR please contact:

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.

HIlights: Year in Review 2020

CHI Year in Review 2020 - click this image to read the newsletter

Despite the pandemic, this has been one of the busiest, most productive years on record for Congenital Hyperinsulinism International (CHI). Please read our 2020 HIlights Newsletter here.

You can also read more about our year in review from CHI’s Executive Director Julie Raskin in her 2020 year end letter here.

The CHI Centers of Excellence (COE) Program

CHI Center of ExcellenceWe are thrilled to announce the launch of the Congenital Hyperinsulinism International (CHI) Hyperinsulinism Centers of Excellence (COE) Program. The CHI COE Program will designate specialist facilities providing the highest quality of care for hyperinsulinism (HI) patients and their families around the world.

Every year, around the globe, thousands of babies are born with HI. They need appropriate and expert care to reduce the risk of brain damage and death and to ensure proper management of their disease for the best possible quality of life, as do all children and adults living with HI.

There are some superb institutions known for providing excellent HI care and participating in groundbreaking research, yet until now there has not been a review process or certificate awarded to institutions for the care of those with HI.

Click here to read more about this program.

CHI receives a Rare As One Network Grant

Chan Zuckerberg Rare As One

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.

Read more at the Press Release here.

CHI wins RARE Innovation Award

CHI receives a Global Genes Rare Patient Impact grant for RARE Innovation. Click here or on the image to read the press release about this grant award.

Watch our video to learn about hyperinsulinism and the children and families who live with it. The video emphasizes the importance of early diagnosis, research, and support for hyperinsulinism families.

New! CHI “What is Congenital Hyperinsulinism” Posters

Informational posters in 23 different languages, available for download and printing on our CHI Posters page.

What is HI posters

HI-Stories, stories from people with congenital hyperinsulinism