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 | Jun 24, 2015 | Uncategorized
Our fifth patient workshop took place at London Zoo on Saturday. It was a great opportunity for patients, family members and friends to meet one another, share experiences and learn more about AKU. The day started off with an hour’s zoo time, where everyone got the...
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 | Mar 18, 2015 | Uncategorized
On Saturday 7th March Hannah, Eve and Nick attended the 1st Annual Genetic Disorders Leadership Symposium in London. The goal of the symposium was to bring together leaders of UK based genetic disorder charities and other patient advocates to learn from...
