Congenital Hyperinsulinism International

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Congenital Hyperinsulinism International could not do the work we do without your financial support. Please help us to continue to improve the lives of people living with congenital hyperinsulinism. Your generous donation allows us to continue to raise awareness to increase timely diagnosis, provide educational opportunities, support HI families and help them access the care they need, and support research.

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The HI Global Registry Has Launched

Patient-Powered Research for a Brighter Future

Press Release: Glen Ridge, NJ, October 8, 2018 – The HI Global Registry will generate new insights into congenital hyperinsulinism (HI), drive new research for treatments and cures, and support the success of clinical trials.

“The HI Global Registry is a groundbreaking new global online research study powered by patients and their families, developed by CHI with partners around the world.” – Julie Raskin, CHI Executive Director

Congenital Hyperinsulinism International (CHI) is very excited to announce today’s launch of the HI Global Registry. The HI Global Registry provides a convenient online platform for the HI patient community to share their experiences of living with congenital hyperinsulinism (HI). By participating in this study, the patient community will help themselves and researchers better understand HI to advance better treatments, a potential cure, and more timely and accurate diagnoses. (scroll down to read more, or click here for a PDF of this press release. Click on the registry logo below to go directly to the Registry).

HI Global Registry


The HI Global Registry consists of a series of surveys with questions about health, treatment, development, and quality of life. People with HI or their parents or caregivers can participate from anywhere in the world. Participants will be able to view graphic representations of the responses of the greater HI global community to see how their personal experience fits into the greater whole.

“This is an exciting day. The HI Global Registry is the first global patient registry for those affected by HI. The Registry team has brought together patient representatives from around the world to work with international researchers and clinicians on the development of the Registry and today we are live. This patient-powered project will be a vital resource to better understand HI for years to come.” – Davelyn Eaves Hood, MD, MBA

The HI Global Registry has been developed and hosted on a platform built by the National Organization for Rare Disorders (NORD), the patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

About HI

HI is a life-threatening genetic disorder that causes severe low blood sugar. In most countries the estimated incidence of HI is approximately 1/25,000 to 1/50,000 births. For those with HI the beta cells of the pancreas secrete too much insulin in an unregulated manner. Excess insulin causes hypoglycemia. Prolonged or severe hypoglycemia can cause seizures, permanent brain damage or death, if left untreated. Due to the dangers of hypoglycemia, HI requires timely diagnosis.

About CHI

CHI, a 501(c)3, is a lifeline to those born with congenital hyperinsulinism (HI) and their families. CHI is the global organization dedicated to supporting children and adults born with HI. CHI is a leading source of funding for research for better treatments and cures, and the foremost advocate for increased
awareness and better medical protocols for HI to reduce preventable brain damage and death from prolonged hypoglycemia.

For more information about this topic, please visit www.congenitalhi.org/higlobalregistry or call Jacqueline Kraska, CHI Research and HI Global Registry Program Director, at 973-842-7559 or email at info@higlobalregistry.org. You may also contact Davelyn Hood, HI Global Registry Principal Investigator, at dhood@congenitalhi.org.


Click here to read our Mid-Year Newsletter for 2018


View the Be My Sugar Gallery to learn about hyperinsulinism and the children and families who live with it.

View our Sugar Baby Gallery

Click the image above to view our Be My Sugar campaign leading up to the 2016 Rare Disease Day!


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

Available for download and printing on our new CHI Posters page; available in English, Spanish, French, German, Italian, Portuguese, and Catalan.

What is HI posters






Stories from people who have congenital hyperinsulinism

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