As we conclude the first quarter of 2025, Congenital Hyperinsulinism International (CHI) invites you to reflect on the progress we’ve made in improving the lives of those affected by congenital hyperinsulinism (HI).
Your support and engagement have been invaluable to our mission. We extend our heartfelt gratitude for staying connected with us and contributing to our shared vision of a brighter future for the HI community.
CHI continues to offer materials to support HI families in educating their communities.
Through the CRN, CHI has released 3 Access and Advocacy statements in 5 languages to help equip HI families with documentation to support their medical care. This includes a List of Essential Medical Care, Medication, Supplies and Services for people with congenital hyperinsulinism (HI). These documents are especially important as tools that HI families can use to advocate for the needs of their child if they are not being met.
Our “Down and Up” music video made with Cook Children’s is now publicly available! Singer songwriter Janna Pelle performed her original song, “Down and Up” with children who attended the Congenital Hyperinsulinism Family Conference at Cook Children’s in Fort Worth, TX last spring. With the help of the Child Life Zone team at Cook Children’s, we now have a music video from the conference! The video is lots of fun and a great way for kids to introduce congenital hyperinsulinism to friends and classmates. We have a blog page about the experience here, as well as a page for kids’ materials where you can access the video.
2025 has already been a busy time for global research and advocacy collaboration.
52 members of our Collaborative Research Network (CRN) met in Lisbon, Portugal to continue their work in support of a better future for people with HI. Members worked in small groups on some of the most high priority research and advocacy topics: Newborn HI Screening, Glucose Monitoring, Neurologic Outcomes, Care Guidelines & Centers of Excellence (COE), and Advocacy: Awareness & Access. The in-person convening accelerated the progress of the CRN. Some recent accomplishments include the completion of a drafted protocol for a universal newborn screening study, letters sent to various medical associations on the gaps in HI care and research, recommendations for Continuous Glucose Monitors (CGM) use for HI, plans for several educational ad campaigns for HI awareness, advocacy statements outlining the essential needs of people with HI, the completion of a draft of lay guidelines to accompany the International Care Guidelines, plans for acknowledging knowledgeable and credible HI care centers outside of our COEs, various papers and projects planned focusing on the neurological outcomes of people with HI, and so much more.
Since the CRN met last year 56 peer-reviewed manuscripts have been published by CRN authors in medical literature, with 11 of these authored through CRN partnerships across institutions. There have also been great successes for six different biotechs developing new treatments, as well as a new partnership formed with a glucose monitoring company that will lead to a better understanding of continuous glucose monitoring (CGM) in people with HI and increased access to CGM. You can read more about the CRN Convening in our recent blog post here.
The CHI CRN was made possible by a 2020 capacity building grant from the Chan Zuckerberg Initiative’s Rare As One Network. Since 2023, the CRN has been funded by individual donors to CHI, family foundations, and sponsorships from biotechs.
Piggybacking on the CRN Meeting in Lisbon was the in-person meeting of the LightCure Consortium. Led by Radboud University in the Netherlands, The LightCure Consortium is developing a targeted photodynamic therapy, that one day could be a promising treatment for congenital hyperinsulinism (HI). CHI is the advocacy partner for this groundbreaking research project and is ensuring that the patient voice and patient-centered research is intrinsic to the project. The advocacy goals of LightCure are in perfect unison with the CRN goal of universal newborn screening so that in the future babies born with HI do not develop neurologic and/or developmental secondary and avoidable conditions. For more information, please visit our LightCure page. At the Lisbon convening we learned about the progress of each of the research partners and our CHI contingent received excellent feedback on the awareness activities planned, both from the researchers and the LightCure Patient Advisory Board that CHI convened.
One of the most exciting elements of the in-person LightCure meeting is the addition of a newly funded arm of the project focused on timely diagnosis of HI to prevent neurodevelopmental issues in people with HI. Th project, led by a scientist in Portugal, will pilot a screening program for HI through blood sample of newborns and the study of extracellular vesicles from blood and urine of children with HI and people with beta cell-related pathology. Extracellular vesicles are key mediators of intercellular communication, which can be used as a biomarker. The aim of this research is to identify an HI-specific signature in these vesicles, which can be used for timely diagnosis of HI.
The HI Global Registry (HIGR) has already made a significant impact in 2025. Earlier this year, we released the 2024 HIGR Annual Report, packed with valuable statistics and insights on living with HI, directly from the perspective of individuals with HI and their families. The impact of this project is undeniable. HIGR data continues to grow as a valued source of scientific information within the HI research community. In 2024, HIGR data was requested for 17 different research projects.
Earlier this month, we announced our HIGR Ambassador program; 12 individuals from all over the world – either people with HI or parents of children with HI– who will advocate within their communities on the importance of participating in the registry.
Additionally, HIGR can now support glucometer and CGM integration! With just a few clicks, our participants’ glucometer or CGM can seamlessly contribute to HI research, care, and treatments.
We have made significant strides in promoting HI awareness through online campaigns and materials.
Rare Disease Month in February was an excellent opportunity to educate the public about the realities of life with HI, as well as offering an outlet for HI families to share their experiences with one another. The theme this year, “more than you can imagine”, inspired us to ask our hyperinsulinism community which aspect of life with HI has been “more than they could imagine”. This included HI families’ struggles, triumphs, and everything in between. We received 32 empowering, thoughtful responses from people with HI and their loved ones. We encourage you to view their responses in our slideshow!
The responses we received showcased the incredible resilience and love within the HI community. We came together over Zoom to share our experiences and support one another.
Rare Disease Month is not only an opportunity to connect with the community and raise awareness, but also a way to make a tangible difference. CHI raised $1300 towards research, support, and awareness for hyperinsulinism! You can learn more about our “more than you can imagine” tee shirt and candle campaigns here.
We recently created a podcasts page to highlight our continued efforts to talk about HI with new audiences. CHI Co-Founder and CEO Julie Raskin has contributed to several podcasts, including In Sequence, Story Collider, and “It Happened To Me, I’m not alone & neither are you”. Listen to hear Julie’s insightful experiences navigating her son’s HI diagnosis and her inspiration behind creating CHI; available on our Publications and Podcasts page.
Upcoming Events
Our first Family Conference of 2025 will be held in Copenhagen, Denmark on May 8-10. This conference, organized with CHI Center of Excellence partner, Odense University Hospital, is a unique gathering of HI families, medical experts, and researchers focused on hyperinsulinism (HI). It’s an opportunity to connect, learn, and empower one another while deepening our understanding of HI. You can read more about the conference here. Registration closes April 25th.
Make an impact! Support hyperinsulinism research with Team CHIbra at the Million Dollar Bike Ride (MDBR). The MDBR will be held on Saturday, June 14th at the University of Pennsylvania campus in Philadelphia, PA. In-person riders can join Team CHIbra here, and virtual fundraisers can create their own fundraising page supporting CHI and HI research here. Over the past 11 years, you have helped us raise over $846,000 for HI research – this year we want to reach $1 million! We hope to see you in Philly (or online) raring to go for HI research!
We are excited to announce that our next US Family Conference will be held in Philadelphia, PA, from October 3 to 5, 2025. This conference will be held with Children’s Hospital of Philadelphia (CHOP), a CHI Center of Excellence (COE). More information is coming soon – stay tuned!
Save the date! June 7th will be the first global HI Awareness Day, celebrated in partnership with HI organizations worldwide. Stay tuned for updates on this unique educational opportunity.
Thank you for your interest in the work of Congenital Hyperinsulinism International (HI)!
Your support is invaluable to us, empowering our mission to improve the lives of those affected by HI through dedicated research, advocacy, education, and support. You can directly support this mission by making just a small contribution to our work.
Support our mission: improve the lives of people with hyperinsulinism.
And thank you to our biotech sponsors – Rezolute, Hanmi, Zealand Pharma, and Rhythm – as well as our individual and foundation donors for your continued support.
