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Author: AKUNA

Radio Interview with Denise Higgins on Handi-Link Radio

Posted on January 14, 2022January 18, 2022 by AKUNA

Handi-Link is a community radio show on CJAM radio focusing on disability issues. Host Cam Wells compares similarities and differences between disabled and able bodied life and talks to those from the disabled community. Listen to this segment where Cam Wells interviews Denise Higgins about being diagnosed with AKU, living with AKU, and treatment &…

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DevelopAKUre clinical trials update webinar

Posted on July 21, 2015July 2, 2021 by AKUNA

Prof. Ranganath will speak to about progress in the DevelopAKUre clinical trials to date, and answer questions from people living with AKU and their loved ones. Speakers: Professor Ranganath Medical Director of DevelopAKUre clinical trial, Helen Bygott Research Nurse for DevelopAKUre clinical trial, Lesley Harrison Patient Support Manager AKU Society, Rob Pleticha Online Patient Communities…

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SONIA 2 clinical trials

Posted on April 14, 2015July 2, 2021 by AKUNA

The SONIA 2 clinical trials will take place in three test centres across Europe. The first patients will begin on April 7th in Piestany, Slovakia. Our Liverpool centre will be the next to start on April 14th. The final location to start will be the Paris centre in France, which is scheduled to begin on…

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SONIA 1 Published Results

Posted on December 8, 2014July 2, 2021 by AKUNA

The main scientific paper from the first study (SONIA 1) was published last week in the Annals of Rheumatic Diseases. This study was the first part of the ongoing clinical trial, to find out what dose of nitisinone is best for patients. In today’s DevelopAKUre blog Oliver tells us about the results presented in the…

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RECENT POSTS

  • Rare Disease Day – 28 February
  • 10th Anniversary of the National Alkaptonuria Centre UK
  • Radio Interview with Denise Higgins on Handi-Link Radio
  • AKU: A Rare Story of Hope
  • Nitisinone approved by the European Commission!

[See All Posts]

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