by AKU | May 20, 2015 | Uncategorized
Today we introduce the new Coordinator for the National Alkaptonuria Centre (NAC) in Liverpool. Hollie Washington is 25, and has lived in Liverpool all her life. This week she has traveled all the way down to Cambridge to visit the AKU Society office, and learn all...
by AKU | May 13, 2015 | Uncategorized
At the end of April, Nick was in the USA attending the World Orphan Drug Congress. In today’s blog he tells us why he attended the event, and what he learnt from his time there. I’m just back from the World Orphan Drug Congress USA in Washington DC, where I...
by AKU | May 6, 2015 | Uncategorized
So far as a charity our biggest community fundraising projects have taken the form of crowdfunding campaigns. Aside from these, grant applications have been our main source of funding, alongside the occasional sponsored event organised by our dedicated supporters. We...
by AKU | Apr 29, 2015 | Uncategorized
In mid-April, Eve attended the Specialised Healthcare Commissioning Alliance (SHCA) meeting in London. The alliance, formed of patient-related groups and corporate members, meet quarterly to campaign on behalf of people with rare and complex conditions in need of...
by AKU | Apr 22, 2015 | Uncategorized
On Friday 17th April we sponsored the Findacure workshop on the topic of communications and PR for small patient groups. The AKU Society decided to sponsor this event in order to share what we have learnt about communications whilst undertaking our Reaching...
