KHI aims to globally unite leading hypoglycemia experts with patients, caregivers, and healthcare providers, and to establish a greater understanding of IKH in the hopes to facilitate improved treatment options and greater quality of life for individuals suffering from KH.
The Launch
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.
The power of the people
This is the first time these families have been able to enter into a support network of like-minded peers to share the daily difficulties presented with this condition, as well as offer and receive empathy and advice. We are committed to support and advocate for those in the KH community through our international KHI Parents Support Group by utilizing the contributions of general medical guidance made by our scientific advisory board, supporting research in the general well-being of KH-families, and furthering research into KH etiology, diagnosis, and management.
Towards enhanced understanding
The organization aims to challenge current perceptions and attitudes to expand the recognition that IKH is more than a normal variation, and establish an international platform for future research collaboration. KHI strives to prevent IKH families from feeling silenced and underserved, as seen in other rare disease families. KHI continues to bridge the gaps between doctors, families, providers, research, and awareness.
A rare disease partner
KHI strives to be recognized not only as a symptom-union, but as a rare disease partner, supporting research towards better understanding of the multifactorial causes of IKH and the genetic complexities of the numerous rare diseases it is associated with. All patients with KH share many of the same challenges, which is why collaboration with other rare disease patient organizations is of high priority
