This year has been difficult for everyone. For AKU patients it’s been especially hard.
Living with a rare disease is isolating. People with AKU often only meet each other at our workshops or at the National AKU Centre (NAC). Since the start of the year, these have all been cancelled.
Although we have had some very good news this year (nitisinone is now licensed for use in AKU across Europe), the damage to AKU patients’ mental health is untold.
We exist to improve both AKU patients’ body and mind. This is why we have launched a new virtual counselling service. This service is free for all AKU patients in the UK and is designed to help people with AKU overcome the negative impact the pandemic has had on their mental health.