Eurordis Digital School

At the start of the month Ciarán our Communications Manager travelled to chilly Gothenburg in Sweden to take part in the inaugural Eurordis Digital School. The workshop was held at the Agrenska Resource Centre for Rare Diseases, a facility designed to provide support and programmes for children and families affected by rare diseases. The two-day training session was centred around the need to ensure patient groups from around Europe with the skills needed to improve their reach and abilities to build communities for their organisations.

Talks ranged from social media for small charities and understanding community building to video editing and Google AdWords. Ciarán also gave a presentation about how the AKU Society uses social media and what we have learned over the years in the digital arena.

Along with the informative face to face meeting, attendance at the event also means that next year Ciarán will have access to a series of webinars held by experts in digital communications. It was an incredibly useful trip, and Ciarán is sure to use the skills he learnt to improve how we engage with our patients via social media.

Photo: Eurordis

RCGP Annual Primary Care Conference

On 24th and 25th October Lesley, our Patient Support Manager and Tony, one of our trustees and AKU patients, attended the RCGP Annual Primary Care Conference at the ACC in Liverpool. The event brings together a range of national and international speakers and delegates where the latest clinical and policy developments are showcased. For many GPs, this is the must-attend event of the year and an excellent opportunity for the AKU Society to raise awareness of the condition and the National AKU Centre (NAC).

The AKU Society last attended this conference in 2012 when Jenny and Oliver manned our stand at the event in Glasgow. We were keen to see if GPs awareness and understanding of AKU had increased over the seven years since then. While some had heard of AKU, only a handful knew about the condition and most weren’t aware of the NAC.

As usual, Lesley took the opportunity to look at the other stands in the exhibition hall to see if there was anything that might be useful for our patient group. Two stands of interest were Lab Tests Online UK and the Chartered Society of Physiotherapy. Both offering information and leaflets that may be helpful for our group of patients. Lesley hopes to have copies available for the patient workshop on 25th November. It was good to see Anna Milan, who does much of the AKU sample testing at the NAC on the Lab Tests Online UK stand.

According to Tony, the conference was well attended with a mix of GPs, GP trainees and medical students. Over the two days, it was noticeable at how more interested the GP trainees and medical students were in finding out about AKU. Where GP’s did show an interest, they were extremely keen to find out more and to find out ways they could identify the condition in patients. Thursday proved to be the busier of the days. Once again delegates found it beneficial to see a person who had AKU and to have the opportunity to ask questions on how it affected/impacted on people’s lives and to see for themselves some of the physical sides of the condition.While it may not have been as busy as some other conferences even if only one delegate went away with the knowledge of how to diagnose AKU and put this into practice, it made attending the event worthwhile.It also allowed Lesley and me to discuss ways on how to promote the work that the AKU Society does and to attract people to the stand.