CHI has a full calendar of in-person and virtual events in 2023. As the year continues, more events will be added. We hope to see you in person or through Zoom this year!
Visit https://congenitalhi.org/events/ to learn more about how to register and participate. Registration is not yet open for all events. More details will be shared as we get closer to each event, so join our mailing list to not miss any updates.
2023 Rare Disease Day, February 28
Rare Disease Day, this year on Tuesday, February 28, is a day that celebrates and amplifies the voices of those living with rare diseases and people who advocate for them. We want to celebrate your dreams and raise awareness about congenital hyperinsulinism (HI) leading up to Rare Disease Day this year by sharing why community members are #RareAndDareToDream. To celebrate the day with our HI community, CHI is hosting a virtual event via Zoom on Rare Disease Day at 12:30 Eastern US Time. Additionally, CHI has designed a 2023 Rare Disease Day shirt available for order.
Learn more here about Rare Disease Day celebrations.
2023 Congenital Hyperinsulinism Family Conference
The 2023 Congenital Hyperinsulinism Family Conference is being organized by Congenital Hyperinsulinism International (CHI) and the Children’s Hospital of Philadelphia (CHOP). It will take place April 14-16, 2023 in Philadelphia.
The CHI staff, the CHOP Hyperinsulinism Center team, additional world-renowned physicians, researchers, congenital hyperinsulinism (HI) specialists, HI family members, and CHI advocacy leaders will be presenting at the conference. There will also be interactive sessions where HI families can share their stories and experiences.
The conference will start with a welcome reception at the Philadelphia University City Sheraton hotel on Friday evening, April 14, 2023. Conference sessions will take place on the CHOP Campus during the day on Saturday, April 15, and Sunday, April 16. Saturday, there will be a conference dinner for all attendees as well.
2022 HI-lights of the Year
We are incredibly grateful that this year brought some of our wonderful congenital hyperinsulinism (HI) community back together, in person, after two years apart, and that we continue to connect virtually with our community across the globe. 2022 has been one of the busiest and most productive years on record for CHI. Let’s look back on our HI-Lights!
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: email@example.com.
It’s time for us to bring the HI Global Registry (HIGR) to the “Max” through an exciting new project, Maximizing the Utilization of the HI Global Registry (MaxHIGR). This project is an international collaboration between leading HI centers and CHI that will add physician-reported data to complement patient-reported responses in the registry. MaxHIGR will help to grow and expand the research possibilities unlocked through HIGR while enhancing the value and impact of the registry.
Any HI patient or caregiver who has completed the relevant HIGR surveys and is interested in participating can now have their physician fill out the MaxHIGR form, which will be returned to them for upload into HIGR. For more information on the project and to learn how you can join, click here!
The 2022 Sugar Soirée
The 2022 Sugar Soirée took place on Saturday October 22, 2022 in the evening at the Montclair Art Museum in Montclair, NJ. Our annual Sugar Soirée brought CHI supporters together to celebrate the strength of the community and to raise funds to improve the lives of children and adults born with congenital hyperinsulinism (HI) and their families. Thank you to everyone who helped make the 2022 Sugar Soirée a success!
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.
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.
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.
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
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
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.
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.
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.