The Rare Reality.

Real stories from families living with Non Ketotic Hyperglycinemia.

Rare Disease Day 2026: Rare Should Never Mean Invisible

Rare Disease Day is not about pity It is about visibility. It is about equity. It is about demanding systems that serve all children — not just the statistically convenient ones.

12 hours ago2 min read

stack of papers in folders, sitting on top of an iPad

NKH Research Publications

List of known NKH Research Publications

Apr 7, 20251 min read