by AKU | Aug 26, 2015 | Uncategorized
Last week Hannah updated us on her training efforts in preparation for our sponsored cycle from London to Cambridge. This week we hear from Sorsha and Eve, who have also been training hard, and getting the route ready for the team. Eve: Along the Norfolk Coast With...
by AKU | Jul 22, 2015 | Uncategorized
The SHCA is a coalition of patient related groups and corporate members with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care. They usually meet quarterly, but this month they held two additional events...
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...
by AKU | Apr 8, 2015 | Uncategorized
On Thursday last week, we attended the launch event for the Cambridge Rare Disease Network at the Judge Business School in Cambridge. Our very own Nick Sireau spoke at the launch, as did several of the network’s other founding members. The Cambridge Rare Disease...
