Research Needs Real-World Data. That Starts with Your Journey
Without real patient journeys and experiences, there are no new discoveries. By joining Citizen Health, you're ensuring that the complexity families navigate daily is understood by researchers. Your journey provides key insights that can accelerate progress.
Dr. Johan VanHove, MD, PHD
Children's Hospital of Colorado
Clinical Biochemical Genetics
Clinical Genetics and Genomics - General
Dr. Johan Van Hove is a clinician specializing in Nonketotic Hyperglycinemia (NKH). If you have clinical questions or would like to schedule an appointment, you may contact him by email or call the Colorado Children's Hospital Metabolic Program to arrange a consultation.
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In the land of the unknown, we have to try.
- Dr. Johan VanHove, MD, PhD
FDA Patient Listening Session
NKH CRUSADERS INITIATIVE:
The NKH Crusaders Patient Listening Session with the FDA in December of 2023 marked a significant milestone in raising awareness and advocating for advancements in treatments for Nonketotic Hyperglycinemia (NKH), a rare and complex metabolic disorder. This event brought together eight families affected by NKH, representing nearly all forms of the condition. The families shared their personal journeys, discussing the initial diagnosis process, the challenges of symptom management, and the daily impact of NKH on their lives. With ages ranging from 2 to 20, these stories highlighted the diverse and individualized experiences of NKH patients, from the most severe cases to extremely mild forms. The session offered a powerful, firsthand look at the burdens of NKH on families and brought invaluable insights directly to FDA representatives, fostering a deeper understanding of NKH's unique and often life-altering demands.
