We work towards improving the lives of all families impacted by idiopathic ketotic hypoglycemia.
The mission of Ketotic Hypoglycemia International is to enhance the understanding of idiopathic ketotic hypoglycemia for the benefit of children, parents and families who have been affected by idiopathic ketotic hypoglycemia. Ketotic Hypoglycemia International aims to support patients and their families by sharing knowledge about IKH, and to support and initiate the continued research into etiology, monitoring and treatment. We define our target group as patients with ketotic hypoglycemia, without a known clinical metabolic or hormonal etiology.
What we do
Prior the establishment of Ketotic Hypoglycemia International patients with recurrent and severe idiopathic ketotic hypoglycemia were struggling to access specialized care. By uniting the families in our organization in a collaboration with the leading experts in the field of complex hypoglycemia from pediatric endocrinology and inborn error of metabolism, we have been able to challenge the outdated perception that severe ketotic hypoglycemia is simply “a normal variation of childhood”.
In KHI we are fostering meaningful multi-stakeholder partnerships in patient-driven research projects built upon a foundation of co-creation and empowerment of patients and their caregivers. This approach led to the first publication “Towards enhanced understanding of idiopathic ketotic hypoglycemia: a literature review and introduction of the patient organization, Ketotic Hypoglycemia International”, written by the experts by experience, the families, and medical experts together.
Supported by our Scientific Advisory Board, we are uniting stakeholders from a variety of sectors on our patient-initiated projects.
Our families can seek peer-to-peer support in our Facebook support group, where we currently have more than 1300 members.
Presentations from leading experts in the field of complicated hypoglycemia can be found on our YouTube channel for educational purposes.
We empower families and medical experts o dive into patient-driven, patient-led and co-created research processes together.
Our numbers that speak
Ketotic Hypoglycemia International was established in 2019 in Denmark. The organization supports over 1300 families across the world. The majority of families are located in the United States, United Kingdom, Australia and Europe, highlighting the need for us to expand our reach to Asia, Russia, The Middle East, South America, Latin America, and Canada. Our support network’s annual growth rate between August 2020 and August 2021 was 104%. The first annual conference in 2021 had more than 1000 registrations from 65 countries, which we expect to reach again at our conference planned for 2022.