by AKU | Jun 8, 2016 | Uncategorized
In this week’s blog, Oliver talks about attending the 8th European Conference on Rare Diseases and Orphan Products (ECRD) In Edinburgh. Where he was asked to present DevelopAKUre as a game changer in drug development, authorisation and access. Oliver also explains...
by AKU | Jun 1, 2016 | Uncategorized
In the rare disease world, communication is king. Patients must communicate with those around them in order to get support, much needed help and to raise the profile of their disease. For rare disease patient groups, effective communication is just as...
by AKU | May 11, 2016 | Uncategorized
The Robert Gregory National AKU Centre (NAC) opened in Liverpool in 2012, providing annual health assessments and access to the drug nitisinone to AKU patients over 16 living in England and Scotland. In this week’s blog we introduce Shelley Jones, who took over as...
by AKU | Apr 27, 2016 | Uncategorized
Last week our first International Patient Workshop took place in Liverpool, bringing together the biggest collection of AKU patients ever! In this week’s blog, find out more about the day and the importance of supporting our international patients and their families,...
by AKU | Apr 6, 2016 | Uncategorized
On 23rd March, Genetic Alliance UK launched a new patient charter on access to medicines for rare disease patients in Scotland. This week’s blog highlights the important recommendations generated from the project, where a range of patient organisations gave their...
