Get Involved
Receiving the diagnosis of PI4KA-related disorder can feel overwhelming. Our Facebook support page will give you the opportunity to connect to other families with similar experiences. You can also get in touch with us directly via email for further information.
Join Our Community
You can make a difference! Join the PI4KA Patient Register to stay informed and contribute to research geared towards understanding and treating PI4KA-related disorder.
Get in touch by email: pi4ka.community@gmail.com
The PI4KA-related Disorder Support Group launching on Facebook soon.
Please check back soon.
PI4KA Family Meeting 2026
On Saturday the 2nd of May the PI4KA Community hosted its first family meeting, which was attended by families from across the world. During this meeting Dr Claire Salter and Professor Emma Baple provided an overview of what we know about this condition and the research work that is in progress. Please find the recording of this section of the meeting below. The focus of the meeting, however, was to facilitate families with children and/or adults affected by PI4KA-related disorder to connect and share their experiences of living with this rare condition. We hope to run a family meeting at least yearly, so please keep checking this website for details of the next meeting date or email us on pi4ka.community@gmail.com with any specific queries.
