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...
by AKU | Sep 12, 2019 | Uncategorized
It’s another busy few months here at the AKU Society. We are travelling all over Europe to represent AKU patients and learn new skills at various events from Gothenburg to Barcelona. This week’s blog looks at where we will be and why. SeptemberCambridge Rare Diseases...
by AKU | Aug 2, 2019 | Uncategorized
Today’s blog is written by Nick Sireau the Chair and CEO of the AKU Society, It was in 2003 that I sat down with Robert Gregory, Prof Alan Shenkin and Prof Ranganath in an office at the Royal Liverpool University Hospital and discussed where we wanted to go with the...
by AKU | May 24, 2019 | Uncategorized
Rare disease research has grown significantly over the past decade, yet conferences devoted entirely to this remain scarce. That’s why the REACT Congress, set up by Dr Olivier Menzel and his BlackSwan Foundation, is so important. At its first gathering,...
by AKU | Apr 3, 2019 | Uncategorized
Last week, Rare Disease UK launched a report of its recent patient survey, looking at exploring what it is like to live with a rare disease. This week’s blog discusses the many findings that were published in the report. Their report: “The Rare Reality...
