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.
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.
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.