How to Participate
Click the button below to complete the patient registry questionnaire on the CoRDS website.
- OR -
You can simply call CoRDS at
1-877-658-9192
and they will enter data on your behalf.
Your privacy is of top importance! This registry is de-identified, which means that only anonymous data will be shared with approved researchers.
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.
