Good news! The AKU Society has been awarded a £45,000 grant from the National Lottery Coronavirus Community Support Fund. This emergency COVID-19 fund will support us for the next six months to support patients mental health.

We have completed two successful Big Lottery funded projects in the past; one between 2007-2010 called the “AKU Information Centre”, which focused on identifying new patients, and one between 2012-2018 which was called “Online Communities for AKU Patients,” focused on creating an online community for patients. We are excited once again to run a new project with lottery funding.

Patients with AKU can suffer from anxiety and isolation. A Rare Disease UK report (2019) found 95% of rare disease patients suffer from anxiety because of their rare disease. Not only are patients with AKU living with anxiety in normal circumstances, but the current coronavirus pandemic has meant AKU patients are now living with extreme anxiety.

Our new from ‘Body to Mind’ project will focus on offering all UK patients free telephone counselling to improve their mental health during COVID-19. We will use the website of the British Association for Counselling & Psychotherapy (BACP) to identify counsellors who are registered with the BACP. Through this, we will book sessions with the appropriate counsellor and offer six sessions for each patient.

We will be organising focus groups, conducting phone interviews and survey to measure the effectiveness of this telephone counselling.

To achieve this, we are hiring external admin support to contact patients and measure the effectiveness of this project. We are aiming to contact all UK patients to see who is interested in free telephone counselling.

If you are interested in this telephone counselling, please email

Keep an eye out on our social media for more updates about this project!

A huge thank you to you The National Lottery Community Fund and the government through the Department for Digital, Culture, Media and Sport for making this all possible.