International AHC Day – Giving a Voice to a Rare and Often Invisible Disorder

January 18

January 18 marks International AHC Day, a global day of awareness for Alternating Hemiplegia of Childhood (AHC), a rare, severe neurological disorder that profoundly affects children and their families worldwide.

What is Alternating Hemiplegia of Childhood?

AHC is characterized by recurrent, transient attacks of paralysis (hemiplegia) that may affect one side of the body, both sides, or alternate from side to side. These episodes can range from mild numbness to complete loss of movement and sensation. Attacks may last minutes, hours, or even days and are often relieved temporarily by sleep.

AHC is a complex disorder that goes far beyond paralysis alone. Many children experience additional symptoms such as abnormal muscle tone, dystonia, eye movement disorders, seizures, developmental delays, and cognitive challenges. The presentation varies greatly from one individual to another, and no two patients experience AHC in exactly the same way.

Triggers for attacks differ between patients and may include physical or emotional stress, illness, bright lights, temperature changes, wind, or water exposure. In many cases, attacks occur without any identifiable trigger. Despite the term “of childhood,” there is currently no evidence that individuals outgrow AHC. It is a lifelong condition.

Building international cooperation for a rare disease

As Chairman of AHC Europe, an alliance representing 15 European countries, I have seen firsthand how critical international cooperation is for rare diseases like AHC. No single country, especially those with very small patient populations, can address the challenges of AHC alone.

Patient organizations play a vital role in connecting families, clinicians, and researchers. Through collaboration, shared data, and collective advocacy, we help accelerate research, improve clinical understanding, and push for better standards of care across borders.

One of the most impactful awareness projects supported by the AHC community is the documentary Human Timebombs the only documentary ever produced about AHC. The film has been widely used for education and awareness and is freely available at www.humantimebombs.com

It has helped healthcare professionals, policymakers, and the general public better understand the reality of living with this disorder.

Why International AHC Day matters

International AHC Day is about visibility. Rare diseases are often overlooked, underdiagnosed, and underfunded. Yet behind every diagnosis is a child and a family navigating a life shaped by uncertainty, medical complexity, and resilience.

At AHC Europe, together with our international partners, our mission is clear:

to raise awareness, support research, strengthen patient advocacy, and ultimately help bring effective treatments to those living with AHC.

On January 18, we invite everyone, healthcare professionals, decision-makers, and the public to learn about AHC, share knowledge, and stand in solidarity with the global AHC community.

Together, even rare voices can be heard.