Ketotic Hypoglycemia International Information

Established in January, 2020, Ketotic Hypoglycemia International (KHI) is a new, worldwide patient organization for families affected by idiopathic ketotic hypoglycemia (IKH). Our scientific advisory board and organization board of directors are volunteers. The mission of KHI is to enhance the understanding of IKH for the benefit of children, parents, and families who have been affected by IKH. KHI aims to support patients and their families by sharing knowledge about IKH, and to support the continued research into etiology, monitoring, and treatment. We define our patient target group as patients with KH without a known clinical metabolic or hormonal etiology. This is to differentiate KHI from patient organizations for GSD, growth hormone deficiency, and adrenal insufficiency, even though members of these groups may also experience KH symptoms. KHI welcomes all patients who suffer from KH in our support group, where we will assist them in connecting with other disease-specific support organizations. KHI was launched on a variety of social media platforms in January 2020 in an effort to connect with families from across the globe. The interest from families affected by KH was significant. We found that the majority of the families were affected by IKH and had been left in limbo with no recognized specialists to reach and no patient organization. The Facebook page for KHI, https://www.facebook.com/ketotichypoglycemiainternational/, has been exceptionally successful, leading to the formation of a Facebook group with more than 1400 families thus far. From the very beginning parents and patients from all over the world worked closely with the Scientific Advisory Board on various patient/caregiver-initiated projects, based upon novel observations in the organization. Our work is an example of how a patient organization and medical experts can work together, connecting family representatives, patients and experts from all over the world around patient-driven research.