by AKU | Aug 15, 2018 | Uncategorized
The newly published results of a study held at the National Alkaptonuria Centre (NAC) show that a drug called nitisinone improves the health of AKU patients. They also show that it reverses a process called ochronosis, where a black pigment is deposited in tissue as a...
by AKU | Jul 18, 2018 | Uncategorized
We are looking for a Fundraising Officer. The vacancy is up online and we encourage people to apply. The successful candidate will be the third Fundraising Officer in our history. Our first was Lydia Powell. Lydia joined the AKU Society after taking a...
by AKU | Jul 11, 2018 | Uncategorized
ALCAP (Association pour la Lutte Contre L’Alcaptonurie) is our French sister society. Founded in 2006 by Serge Sireau, it represents over 70 AKU patients in France. Serge is pictured here with his son, AKU Society CEO Nick Sireau, at April’s International Patient...
by AKU | Apr 11, 2018 | Uncategorized
There are over 7,000 identified rare diseases. Eighty per cent of them are genetic, like AKU. Together, they affect 3.5 million people across the United Kingdom. Each individual disease, though, only has a small patient population. Because of...
by AKU | Apr 4, 2018 | Uncategorized
On 21st March, Reece Edmends, our Admin and Communications Officer, went to a meeting of the Specialised Healthcare Alliance. It was held in the beautiful setting of the House of Lords. Here, Reece explains why he went and what was said. The NHS works through services...
