The Rare Reality.

Real stories from families living with Non Ketotic Hyperglycinemia.

Understanding Sodium Benzoate Grades and Certifications

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.

Mar 64 min read

NKH Research Update: Newborn Screening Development 🧬

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

Mar 21 min read

NKH Families Invited to Participate in International Rare Disease Survey

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.

Mar 21 min read

Dimly lit hospital hallway with a blue tint, lined with closed doors and overhead lights reflecting on the shiny floor. Exit sign visible.

Rare Disease Day 2026: What It Really Means for Families Living With NKH

What does Rare Disease Day mean to you? It has so much meaning to me. It hits personal. Some years on this day, I am filled with hope. Some years on this day, I am tired. Tired of fighting for what our children need, but then I think of all the rare disease warriors who fight to live and breathe, and I remember my why!!

Feb 282 min read

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.

Feb 252 min read

Luka’s Story: Courage, Resilience, and Life with NKH

Luka’s inspiring journey with NKH, respiratory failure, and a tracheostomy — and the resilience that continues to define his life.

Feb 251 min read

Group of people holding hands, raising them up in support of each other

Who Is Your Army?: Rare Disease Day 2026

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.

Feb 192 min read

image of an IV pump and bag hanging in hospital room

Medical PTSD: When the Fight Doesn’t End After the Hospital

When your child is diagnosed with NKH or any long term illness or cancer, your nervous system doesn’t get a choice. You’re thrown into survival mode.

Feb 123 min read

Jeanne Carras with Tempa Newbold, NKH patient

The Audrey Tribe Memorial Scholarship

We are honored to announce the Audrey Tribe Memorial Scholarship — awarding $1,000 to an NKH family attending the 2026 NKH Crusaders Conference for the first time. Read Jeanne’s heartfelt letter about Audrey’s legacy and the inspiration behind this gift.

Nov 1, 20253 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