The Rare Reality.

Our downloadable guide was created to explain the most common grades and certifications associated with sodium benzoate and what they indicate about testing, manufacturing standards, and product safety. For example, some certifications focus on pharmaceutical manufacturing practices, while others focus on safety for food consumption or cosmetic use.

We want to share an important newborn screening research development happening in the United States.

The NKH community has been invited to take part in an important international initiative focused on amplifying the voices of patients and caregivers living with rare brain signaling-related disorders — including NKH.

My son Thaddeus was born February 10th 2024. What should have been the happiest moment of life, became a nightmare. Newborn Thaddeus in the NICU After 12 days of watching my child never cry, never open his eyes and need ventilator support we had our diagnosis, Non Ketotic Hyperglycinema. From that moment life changed, but I'm here to share our story and offer hope.

How Much Are You Willing to Fight? It’s easy to stand on the sidelines. It’s easy to watch others carry the weight. It’s easy to complain that nothing is changing while waiting for someone else to make it happen. But change does not come from waiting. Change comes from movement.