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 will host its first family meeting from 3-5pm (BST). During this meeting Dr Claire Salter and Professor Emma Baple will provide an overview of what we know about this condition and the research work that is in progress. The focus of the meeting, however, will be 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. Everyone is welcome to join this meeting, which we hope will provide an informal and friendly forum to discuss all things related to PI4KA. The meeting will be hosted on Zoom and the link will be provided to those that register interest in attending.
To register please contact us at pi4ka.community@gmail.com . If there is anything you would like covered or included in the meeting, please do let us know. We look forward to meeting you then.
