Congenital Hyperinsulinism International (CHI) is thrilled to be back in your inbox with another long-awaited newsletter! 2026 is shaping up to be an impactful year for CHI, and we’re excited to take a moment to reflect and share updates on our work advancing research, improving care, and supporting the hyperinsulinism (HI) community. Read on to (re)discover the initiatives and events that have kept us so busy!
Awareness
We’ve continued to shine a light on the needs of people with HI through two annual observances:
Rare Disease Day
Each year, February’s Rare Disease Day gives CHI an opportunity to highlight an important issue related to HI, and also to demonstrate our solidarity with the rare community. This year, we asked families and people with HI to share their timeline of hypoglycemia detection and what they wished every hospital knew about HI. We received dozens of submissions from HI families’ first experiences with hypoglycemia, creating a powerful collage of aspirations for improved recognition and treatment. You can view a slideshow of those responses here, as well as a blog post about all the festivities here.
Global Hyperinsulinism Awareness Day
In June, we participated in the third Global Hyperinsulinism Awareness Day on June 7th with our biggest splash yet! With a nod to the June 7th date, we asked members of HI community around the world to share 7 facts about themselves and HI. We received over 60 responses… that’s over 420 unique statements about life with HI! We were honored to share these facts, lessons, concerns, and aspirations from HI families, people with HI, Centers of Excellence, partner patient organizations, and biotechnology companies developing HI treatments, demonstrating the strength of this community’s solidarity. You can view a slideshow of our community’s 7 things here, along with an HI Awareness Day blog post by HI Global Registry Ambassador Anna.
Research
Research is an essential cornerstone to the work of CHI; fueled by collaboration and new discoveries, CHI is charting a better future for people with hyperinsulinism around the world.
The Collaborative Research Network Convening in Madrid, Spain:
Our 4th Collaborative Research Network (CRN) convening took place in Madrid, Spain, in February, where we gathered with over 60 medical, research, and advocacy professionals to continue our singular focus on the most pressing HI research and advocacy projects. The work continued in the newborn screening, glucose monitoring, advocacy, genetics, neurologic outcomes, data sharing, and natural history working groups. A spotlight topic was the NICU for the HI neonate. The working groups continued to meet virtually throughout the spring, and the summer work is just beginning. Stay tuned for details about the CRN advocacy group’s Glucose is a Vital Sign letter-writing campaign, coming soon!
The LightCure Consortium Meeting in The Hague:
Soon after the CRN meeting, we met with our LightCure colleagues in The Hague. The meeting this year was yet another productive session, attended by all partners in the consortium who shared progress, gaining insights from the cross-disciplinary discussions. The new app, Hypo Care by CHI, available on Android and Apple devices, as well as the beautiful documentary film “Turn Hours Into a Lifetime,” were both made possible by this grant. The film shares the authentic experiences of three hyperinsulinism families, and we have three accompanying shorts highlighting Lena, Johan, Denis, and their families. The LightCure Consortium is funded by a Horizon grant from the European Union.
Scientific Meetings:
CHI had three posters accepted to present at scientific meetings across the US, including “The Impact of Subtotal Pancreatectomy on People with Congenital Hyperinsulinism and Their Caregivers” at the Pediatric Endocrine Society (PES) Annual Meeting in San Francisco, “Diabetes and Glycemic Outcomes After Pancreatectomy for Diffuse Congenital Hyperinsulinism” at the American Diabetes Association (ADA) session in New Orleans, and “Congenital Hyperinsulinism Beyond Childhood: Clinical Characteristics and Unmet Needs in Adults” at ENDO 2026 in Chicago. These meetings are fundamental to our connections with the clinicians and researchers with an interest in hyperinsulinism and are an opportunity to share our own research with CRN partners with these audiences. All of these posters are available to view on our website here.
New, first-of-its-kind Paper on Pancreatectomy:
Published last month in the peer-reviewed medical journal Frontiers in Endocrinology, the CHI research team has written “The Impact of Subtotal Pancreatectomy on People with Congenital Hyperinsulinism and Their Caregivers.” Using data from the HI Global Registry (HIGR) and interviews with individuals living with HI and parents, this research offers important insights into what individuals experience in the years that follow pancreatectomy surgery. We are incredibly grateful to the physician researchers from the CRN, Dr. Indraneel Banerjee, Dr. Henrik Thybo Christesen, and Dr. Diva D. De Leon-Crutchlow, for collaborating with our research team to develop such thorough, thoughtful new literature on the topic.
The Open Hyperinsulinism Genes Project bridges global disparities in access to genomic medicine
CHI is regularly contacted by clinicians and parents of children with congenital hyperinsulinism from all over the world who are seeking genetic testing with no means to access or afford it. When we share with them that through the Open Hyperinsulinism Genes project this testing is available to them free of charge, wherever in the world they live, the news is often received as a miracle.
This new article published in Nature Health explores how this collaboration between Royal Devon University Healthcare NHS Foundation Trust and CHI is advancing scientific discovery while expanding equity in rare disease care and research—exactly where our focus belongs.
Events
In-person and virtual events throughout the year reinvigorate us to advocate for people with HI and improved treatments!
Congenital Hyperinsulinism Family Conference in Antalya, Turkey
In May, we hosted our first family conference in Turkey, co-hosted with Dr. Huseyin Demirbilek and his team from the Turkish patient advocacy organization KOHHA-DER. Set in Antalya, a beautiful coastal town, the conference expanded international scientific and clinical knowledge to the Turkish HI community. The clinicians and researchers present learned from the lived experience of the HI families present, and speakers and attendees came from around the world. You can view photos from the event here, and access many of the presentations here.
Virtual Events
Virtual events like the recent NORD panel on “Participating in Clinical Research: What Patients and Families Should Know” and Medscape symposium on “Exploring Innovative Pathways for Congenital Hyperinsulinism Treatment” were excellent opportunities to reach a larger clinical and rare disease audience. Our CEO Julie Raskin was invited as a guest moderator or panelist at each of the events. Exploring Innovative Pathways for Congenital Hyperinsulinism Treatment is available online and offers CME credit for physicians and nurses through March 13, 2027. The program features expert faculty members Diva De Leon-Crutchlow, MD, and Paul Thornton, MB BCh, BAO, and is moderated by Julie Raskin, and is available for CME credit here. This session came about through a strategic collaboration between Medscape, the Pediatric Endocrinology Nursing Society (PENS), and Congenital Hyperinsulinism International (CHI), and with funding support from Zealand Pharma.
The Million Dollar Bike Ride
For the 14th year, Team CHIbra walked, rode their bikes, and fundraised for a hyperinsulinism research project at the Million Dollar Bike Ride in Philadelphia, PA. They raised over $37,000 towards a pilot research grant awarded in September. Though we didn’t reach our goal of $70,000, you can still donate to improve lives at our donation page. Photos from the event are available on our website, as well as a blog post: Riding, Walking, and Talking for a Cure.
Hill Day
To round out the first 6 months of the year, CHI participated in our first-ever Hill Day in Washington DC on June 30th, bringing together HI advocates from across the country to meet with congressional offices and share the urgent needs of people living with congenital hyperinsulinism. Nine advocates participated in 18 meetings, educating policymakers about the challenges faced by individuals and families affected by HI and advocating for solutions that can improve lives. Thank you to our advocates and to Rezolute for making this important day possible. This is just the beginning of building stronger awareness and support for the HI community. Read our new blog post detailing all of the excitement here: CHI’s first Hill Day 2026.
Upcoming Events
- Our next Congenital Hyperinsulinism Family Conference will be in Marseille, France, September 4-6. More information about the conference is available here.
- The Giro del Vino IX, premier cycling event and fundraiser for CHI, will be held on October 4th in the beautiful vineyards of Hammonton, NJ. For more information and to register, please visit our website here.
- Join us for CHI’s signature annual fundraiser, The 2026 Sugar Soirée, on Saturday, November 21 at The Highlawn in West Orange, NJ—an unforgettable evening with sweeping NYC skyline views. More information is available here, and ticket sales will open soon.
As we look ahead to the rest of 2026, we are filled with gratitude for this incredible community—patients, families, clinicians, researchers, and supporters—who make our work possible every day. Your voices, research efforts, stories, and commitment continue to drive meaningful progress toward better treatments and, ultimately, a cure.
If you would like to support this work, please consider making a donation to CHI. Every contribution helps advance research, expand access to care, and bring hope to families around the world.
Support people with hyperinsulinism today
Thank you for being part of the CHI community and for standing with us in this mission. We look forward to staying connected, sharing more updates, and seeing many of you at upcoming events.
With appreciation and hope,
The CHI Team
