Thank You for Taking the Time Learn More About our Campaign
The purpose of the Glucose is a Vital Sign Letter-Writing Campaign is to help healthcare professionals and hospitals better understand the long-term impact that early recognition and management of neonatal hypoglycemia can have on a child’s life. It is not to assign blame or file complaints. The letter you may have received was written by the parent of a child born with congenital hyperinsulinism (HI) at your hospital, birthing center, or birth practice. Congenital Hyperinsulinism International (CHI) facilitated the campaign by providing templated information about HI and the need for early recognition and ongoing treatment that parents could personalize to share their experiences with the facility where their child was born.
Please note that CHI has not independently verified the personalized letters sent for accuracy or reviewed the personal sections added by the writer.
CHI will only publish quotes from a participant’s letter with their explicit consent and after all identifying information has been removed from a quote. This includes removing the names of patients, family members healthcare providers, hospital staff, and any hospital names or locations.
We appreciate your willingness to read and consider the experiences shared through this campaign. By fostering awareness, dialogue, and continuous learning, we can work together to improve outcomes for newborns experiencing hypoglycemia and help ensure that every child receives timely, appropriate care.
About Congenital Hyperinsulinism (HI)
Congenital hyperinsulinism is a rare disorder in which the pancreas produces too much insulin, causing persistent and potentially severe hypoglycemia (low blood glucose). If not recognized and treated promptly, prolonged hypoglycemia can lead to seizures, brain injury, developmental delays, and even death.
Because HI is rare, many healthcare professionals may encounter only a few cases, if any, during their careers. As a result, hospitals may never learn that a newborn discharged from their care was later diagnosed with HI or experienced complications related to delayed diagnosis.
Continuing the Conversation
Many families participating in this campaign welcome constructive dialogue about their experiences and the lessons that can be learned from them.
If your institution would like to:
- Learn more about congenital hyperinsulinism
- Discuss newborn hypoglycemia recognition and management
- Invite an educational presentation for clinicians or staff
- Connect with patient advocates
- Engage with HI experts and researchers
Congenital Hyperinsulinism International may be able to facilitate these conversations and connect your team with experienced advocates, pediatric endocrinologists, neonatologists, and other professionals knowledgeable about HI.
If you are located in the US or in a country not included in the list below of patient organizations, please email CHI at info@congenitalhi.org
International Hyperinsulinism Organizations and Advocacy Groups
Families participating in this campaign come from countries around the world and may be connected with national or regional hyperinsulinism organizations.
A directory of international organizations and patient groups is available below. Hospital staff may reach out to the following groups for more localized information about hyperinsulinism or to facilitate a dialogue with the patient organizations in their country:
- United States/International: Congenital Hyperinsulinism International CHI)
Email: info@congenitalhi.org - Austria: Lobby4Kids – Kinderlobby, Austria
Email: ireneprom@yahoo.com - Japan: Japan Hyperinsulinism Patients & Families Association
Email: jhia2025.office@gmail.com - Germany: Kongenitaler Hyperinsulinismus e.V. – Germany
Email: verein@hyperinsulinismus.de - Italy: Vivere con CHI, Italy
Contact via email through this link
Helpful Resources
CHI Awareness and Advocacy: A Call to Action
Learn more about the needs of individuals born with congenital hyperinsulinism and opportunities to improve awareness and care. Our Advocacy Statement and List of Essential Medical Care, Medication, Supplies and Services for people with congenital hyperinsulinism (HI) are available in German, French, Portuguese, and Spanish here.
The International Guidelines for the Diagnosis and Management of Hyperinsulinism
These guidelines published in 2023 are a collaboration of work by HI experts around the world, including many who are a part of our Collaborative Research Network and CHI staff, with direct input from the patient community. The recommendations include: Screening and diagnosis protocols, genetic testing, glucose monitoring, medication management, surgical options, fasting tolerance as a precursor to medical discharge, referrals for developmental surveillance, feeding assessment, and early intervention, and the development of adult programs for adults with HI. The full guidelines are accessible here.
CHI has also created a simplified, illustrated version of these guidelines that can be helpful to share with staff and future patients. The paragraphs correspond to the original document, enabling the reader to move between the two documents as they choose. The simplified guidelines are accessible here.
An Overview of Hyperinsulinism
Browse our webpage providing a comprehensive overview of congenital hyperinsulinism. The page includes known causes of HI, genetics, diagnosis, treatment options, and long-term outcomes. At the end of this page, you will find a list of some of the published research articles categorized by topic for further reading. You can access the overview here.
Centers of Excellence (COEs)
There are eight Centers of Excellence (COEs) in the United States and Europe, all of whom have been recognized for their exceptional, multidisciplinary care and extensive experience in diagnosing and treating people with hyperinsulinism. These centers can be excellent resources to contact should you encounter HI again in the future. The directory of COEs, as well as more information about the program and criteria, can be accessed here.
HI-Stories
We encourage you to browse our HI-stories page where you can read or listen to the experiences of hyperinsulinism families from around the world, including those of different genetic types and neurological outcomes.
Together, we can help make sure that glucose is considered a vital sign.
