by AKU | Jan 31, 2020 | Uncategorized
In this week’s blog, we look at the much-anticipated relaunch of the AKU Society website. Our new site has been designed to be much more user-friendly, accessible and easier to navigate while allowing the most important content to be front and centre. Earlier last...
by AKU | Jan 17, 2020 | Uncategorized
Today’s blog is written by a long-time friend of the AKU Society Jess Barnes. Jess’ son was diagnosed with AKU six years ago. When I found out that the AKU Society needed support in funding the first-ever paediatric study into alkaptonuria, I knew I needed to...
by AKU | Dec 16, 2019 | Uncategorized
Today’s blog is written by the head of the Brazilian AKU Society, Flavia Mayrink. Originally written in Portuguese, the blog details her recent visit to the National Institutes of Health (NIH) which is based in Bethesda, Maryland, USA.In September...
by AKU | Dec 16, 2019 | Uncategorized
We are delighted to announce that all the data from the SONIA 2 clinical trial has now been analysed and very positive trends have been highlighted. Due to this, SOBI (Swedish Orphan Biovitrum) announced that they are going to apply to the European Medicines...
by AKU | Dec 13, 2019 | Uncategorized
Five years ago, we partnered with the Royal College of GPs (RCGP) to develop an online eLearning module all about AKU. The aim of this module is to increase awareness of AKU among health professionals, especially GPs, and ultimately to improve diagnosis. This was...
by AKU | Nov 8, 2019 | Uncategorized
Eurordis Digital School At the start of the month Ciarán our Communications Manager travelled to chilly Gothenburg in Sweden to take part in the inaugural Eurordis Digital School. The workshop was held at the Agrenska Resource Centre for Rare Diseases, a facility...
