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...
by AKU | Apr 15, 2015 | Uncategorized
In today’s blog we simply want to say a huge thank you to everyone who donated to our crowdfunding campaign on Indiegogo. Thanks to your incredible contributions we smashed our target, and can now support patients to take part in our latest research. When...
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...
