Event Aims to Bolster Connection, Learning, and Encourage Participation in the Hyperinsulinism Global Registry
ALISO VIEJO, Calif.–(BUSINESS WIRE)–Global Genes, a leading patient advocacy organization, and Congenital Hyperinsulinism International (CHI), a foremost nonprofit dedicated to improving the lives of children and adults living with congenital hyperinsulinism (HI), today announced the inaugural CHI Family Meet-Up. The one-day event aims to provide the opportunity for those in the community and their families to connect, share their stories, and to learn about new findings from the Hyperinsulinism Global Registry (HIGR), the only patient-reported congenital hyperinsulinism natural history study. The event will be held on November 5, 2022, from 9:30AM- 1:30PM at the Cayton Children’s Museum in Santa Monica, California.
As the most frequent cause of severe, persistent hypoglycemia in newborn babies and children, congenital hyperinsulinism affects one in 25,000 to 50,000 babies, with nearly 60% of HI babies developing hypoglycemia during the first month of life. Brain damage can become a major factor if their condition is not recognized or cannot be managed.
“By bringing families and friends in the HI community together we provide the opportunity to learn and connect with those affected by this rare disorder,” said Julie Raskin, Executive Director of Congenital Hyperinsulinism International. “New findings from the HI Global Registry provide hope to these families and by gathering data we can have a profound impact toward uncovering treatment options for this disease that does not have an approved treatment for the majority of patients who live with it.”
The event will feature commentary from speakers Jessica Aronoff, CEO of the Cayton Children’s Museum and her son, Max, who was born with hyperinsulinism. The agenda will cover topics such as the importance of participating in the HI Global Registry, key learnings from the Natural History of HI and how the Global Registry is helping in the design of clinical trials.
The inaugural Congenital Hyperinsulinism International Family Meet-Up is made possible through a grant from Global Genes, a leading rare-disease patient advocacy organization, as part of its RARE-Meet Ups program, which aims to fund critical education and much-needed in-person collaboration for rare disease patients, caregivers and advocates.
About Global Genes
Global Genes is a 501(c)(3) leading international non-profit organization that is establishing a globally connected community committed to overcoming the challenges of rare disease. Together with our partners, we help people find and build communities, gain access to information and resources, and provide hope and support for the more than 400 million people affected by rare disease around the globe. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.
About Congenital Hyperinsulinism International
Congenital Hyperinsulinism International (“CHI”) is a nonprofit 501(c)3 corporation dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism (HI). CHI is a life‐threatening genetic disorder that causes severe low blood sugar (hypoglycemia) in infants and children. Prolonged or severe hypoglycemia can cause seizures, permanent brain damage, or even death if left untreated.
Contacts
Global Genes:
Julie Dietel
Finn Partners
978-502-7705
julie.dietel@finnpartners.com
