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Category: Uncategorized

FDA has approved HARLIKU (nitisinone) Tablets

Posted on June 24, 2025 by AKUNA

BOSTON, Massachusetts and Cambridge, UK – June 19, 2025 – Cycle Pharmaceuticals announced that the FDA has approved HARLIKU (nitisinone) Tablets for the reduction of urine homogentisic acid (HGA) in adult patients with AKU.1  read more

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The History of AKU

Posted on June 15, 2025 by AKUNA

Co-founder of the AKU Society and inaugural director of the National AKU Centre, Professor Ranganath, gives a comprehensive overview of the history of AKU.

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AKU Patient Registry

Posted on April 9, 2024April 9, 2024 by AKUNA

If you have been diagnosed with AKU anywhere in the world, you can make an important contribution to our research into understanding, treating, and curing the condition.    WHAT IS THE AKU PATIENT REGISTRY? The global patient registry is managed by the AKU Society and collects data on the progression and prevalence of AKU across…

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Rare Disease Day – 28 February

Posted on February 10, 2023February 10, 2023 by Denise Higgins

The last day of February is the day designated to focus our attention on rare disease. The global prevalence of alkaptonuria is 1 per 100,000 to 250,000. The prevalence of the disease in the United States is 1 case in one million population (1). According to the AKU Society and the DevelopAKUre Consortium, the number of alkaptonuria patients…

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10th Anniversary of the National Alkaptonuria Centre UK

Posted on July 18, 2022February 10, 2023 by Denise Higgins

Shared by The AKU Society, UK June 2022 marked the 10th anniversary of the Robert Gregory National Alkaptonuria Centre (NAC) offering life-changing support and treatment to AKU patients. First commissioned by NHS Highly Specialised Services in April 2012, the NAC opened its door to patients for the first time in June 2012, and has now…

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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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AKU: A Rare Story of Hope

Posted on December 7, 2021December 7, 2021 by Denise Higgins
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Nitisinone approved by the European Commission!

Posted on October 30, 2020 by Denise Higgins

The AKU Society in the UK is incredibly proud to announce that the European Commission (EC) has extended the existing marketing authorisation for nitisinone use in AKU. This is the culmination of years of hard work and dedication. “We hope this decision means that patients across Europe will now begin to be able to access nitisinone. With this…

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Sonia 2 Nitisinone Trial Results

Posted on July 24, 2019 by Denise Higgins

SONIA 2 and DevelopAKUre – Results 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 Agency (EMA) for market authorisation…

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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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RECENT POSTS

  • FDA has approved HARLIKU (nitisinone) Tablets
  • The History of AKU
  • AKU Patient Registry
  • Rare Disease Day – 28 February
  • 10th Anniversary of the National Alkaptonuria Centre UK

[See All Posts]

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