In today’s blog, we look at our recent mini online patient workshop held this February. The workshop was designed to fill the gap left by face-to-face meetings that have not been able to go ahead due to COVID-19 and lockdowns in the UK.

Held on Thursday 11th February, the workshop was attended by 21 UK patients and was designed to help them manage their pain and anxiety during the lockdown. We did this by inviting a speaker to give a taster session on the benefits of mindfulness techniques. Evidence-based research has shown mindfulness-based techniques to be hugely effective in reducing the anxiety, depression, irritability, fatigue, and insomnia that arise from chronic pain and illness.

The workshop started with a brief National Alkaptonuria Centre (NAC) catch-up from Dr Milad Khedr, the NAC’s Clinical Director. He updated us on the current situation at the NAC with COVID-19 restrictions and lockdowns by explaining the use of virtual consultations for patient who may have missed their annual visit to the NAC. Dr Khedr also touched upon the results of SONIA 2 and DevelopAKUre and the next steps for nitisinone to be licensed across Europe.

Next was Kym Winter, CEO of rareminds, a mental health community interest group set up to support rare diseases patient groups combat mental health issues. Kym explained to the group about the free counselling service rareminds and the AKU Society have set up together. The service aims to give all UK-based AKU patients access to free virtual counselling sessions with an accredited psychotherapist to talk about, and work through, the impact of AKU and COVID on people’s mental health. To learn more about the project, please head to the dedicated web page here.

The final and longest talk was from Steve Smith, Mindfulness Lead and Teacher from rareminds. Steve ran an interesting interactive introductory session on some of the techniques from mindfulness that can help with managing pain, anxiety or stress.

He took us through a couple of exercises to illustrate that it is often not just the ‘thing’ itself that is problematic or difficult to deal with (i.e. pain, or worry) but all the additional thought processes and feelings that we then pile on top that can make things harder to cope with. Mindfulness is a way of staying focused and connected to the present moment and observing the thoughts, sensations or feelings that emerge – whatever they are.

The NHS is now recommending mindfulness for several conditions, including pain management and depression. You can read more about mindfulness on the NHS website here. There is a lot of evidence emerging that learning a skill such as mindfulness can have positive outcomes for dealing with all sorts of situations and be beneficial for emotional wellbeing overall.

New Upcoming Course

The AKU Society is really pleased to partner with rareminds to run an 8-week online Mindfulness Course FREE for up to 12 AKU patients and family members. This will be running for 2 hours on a Tuesday morning or afternoon (depending on numbers) from Tuesday 23rd March. If you would like to register your interest in the course, please contact Lesley at as soon as possible.

If you would like to speak to Steve to find out more about the programme or how mindfulness can help, please do contact him directly at

Thank you to everyone who attended the workshop and keep tuned for more information on future online and in-person workshops (COVID-19 dependent) soon.