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Links & Resources

For more detailed information about AKU and ongoing research and clinical trials, please visit our sister website in the UK:  https://akusociety.org/

Rare Disease Communities (http://www.rarediseasecommunities.org/en/community/alkaptonuria-aku) is an online social network for patients & families to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform will also provide links to quality information and involve patient associations in the governance and growth of each community. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).

RECENT POSTS

  • AKU Patient Registry
  • 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

[See All Posts]

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The AKU Society of North America
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