AKU Society

The AKU Society of North America is a non-profit organization that focuses on improving the quality of life of AKU patients and their families by providing education, resources, and opportunities for interaction for patients, families, and physicians associated with alkaptonuria (AKU). The Society will raise funds for support of research, education, and meetings to advance knowledge of the disease and possibilities for treatment of AKU. Funds will be raised through solicitation of donations and application for grants.

New Learn About AKU! Patients with AKU often struggle to get a diagnosis. We want to educate doctors to improve diagnosis rates and local care. This is why we have created a free, accredited, online learning module with the Royal College of General Practitioners (RCGP). It is all about AKU, and focuses on diagnosis and care. We need you to spread the word, and tell your doctors, nurses, and healthcare professionals about the module. Although it is aimed at GPs, anyone can take the module for free to learn about AKU. This means you can take it too! With this link.

SONIA 1 Published Results: 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 paper, and explains why they are important: http://www.developakure.eu/publication-of-sonia-1-results-paper/

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 May 12th. Dates may change so keep your eye out for updates. For more information check out this great visual blogpost. For more information visit: akusociety.org

DevelopAKUre clinical trials update webinar: 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 Manager EURORDIS
Tuesday, July 21st from 3-4pm UTC London time, Find your time here.
Location: https://eurordis.adobeconnect.com/_a830956913/rare_disease_communities/
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The AKU Society of North America • 10451 Roselle Street #300 • San Diego, CA 92121 • (800) 549-8110

501(c)(3) EIN #27-5527376