PI4KA Community: A Support Network for Families Affected by PI4KA-Related Disorder

Our Mission

At PI4KA Community, our mission is twofold: to support families affected by PI4KA-related disorder and to foster groundbreaking research that can make a difference in their lives.

To read more about Symptoms, Causes, Diagnosis and Treatments & Management, visit our About page to find out more.

Our Values

The PI4KA community is dedicated to serving patients with PI4KA-related disorder worldwide. We wish to facilitate an open and inclusive space where families, medical professionals and scientists can come together for support and collaboration towards our common goals.

Our Goals

• To develop a network of support and information for diagnosed individuals and their families
• To create a central hub for research into the rare and newly identified PI4KA-related disorder
• To raise awareness and compile information related to the disorder
• To assemble a patient registry of patients diagnosed with PI4KA-related disorder