About the aHUS Alliance

The aHUS Alliance is an umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the world. This alliance was formed in the first quarter of 2013 at a meeting of various aHUS patient groups in Barcelona, Spain.
It is important to have such an organization so that a concerted effort can be made by joining hands together towards the common goals of supporting aHUS patients and their families, discussing and addressing common concerns, and improving access to drugs and therapies that can save lives and improve outcomes.
The objectives of this alliance are:

  1. Supporting aHUS patient groups around the world and help to:
    • Increase awareness about aHUS
    • Improve access to diagnosis, treatment and therapies
    • Provide the latest medical information about the disease
  2. Assisting national and global initiatives regarding data collection/interpretation specific to aHUS patient issues and related key medical aspects
  3. Improving interaction among clinicians and aHUS researchers around the world.
  4. Interacting with industry to promote consideration of patient viewpoints, insights, and needs along with input from other important stakeholders.