Media Resources

  • A New National Day for World’s First Genetic Disease

    Date: 25-Nov-2013

    Monday, November 25, 2013 CAMBRIDGE, UK: Monday 25 November marks the first Black Bone Disease Day, to raise awareness of the world’s first genetic disease. Sir Archibald Garrod discovered Black Bone Disease, also known as alkaptonuria or AKU, in 1901. He is one of the grea.. ...more

  • Patient group crowdfunds $120,000 for trial to treat Black Bone Disease

    Date: 31-Oct-2013

    Thursday, October 31, 2013 Cambridge, UK, 31 October 2013 - A patient group has used the crowdfunding website Indiegogo to raise $120,000 to launch an international clinical trial to treat Black Bone Disease, the first genetic disease ever discovered. The campaign, called Help Us.. ...more

  • One man’s fight to save his sons from a rare and debilitating disease

    Date: 11-Sep-2013

    Wednesday, September 11, 2013 Dr Nicolas Sireau, a social entrepreneur whose two sons have alkaptonuria (AKU), a rare genetic disease, has launched a major online crowdfunding campaign to help find a cure for the condition. The new campaign is running on Indiegogo, a leading inte.. ...more

  • Two AKU Patients from the US and their stories

    Date: 08-Nov-2012

    Thursday, November 08, 2012 “It’s a cartilage degeneration disease really. It’s like a sponge in the sink; it’s real good for a real long time, and then one day you pick up the sponge and it falls to bits in your hands." Two AKU patients from the U.S tell their.. ...more




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AKU Blog

DevelopAKUre SONIA 2 - Update
12-Dec-2018

We are happy to announce that two of our three SONIA 2 trial sites have now finished seeing patie.. ...more

Garrod Day Coffee Morning 2018 - On The Day
28-Nov-2018

Yesterday was the annual Garrod Day Coffee Morning. We celebrated Sir Archibald Garrod&.. ...more

Sir Archibald Garrod and Garrod Day 2018
01-Nov-2018

Garrod Day is quickly approaching. It’s a very important day in the history of alkapto.. ...more

October at the AKU Society
25-Oct-2018

The AKU Society has had a hectic month. In today’s blog, we hear about what each team .. ...more

Stand Up For AKU Comedy Night Spectacular!
10-Oct-2018

Last week we held our third annual Stand Up for AKU Comedy Night in Cambridge, at the snug a.. ...more