Results of RareConnect International aHUS Survey

The results of RareConnect’s international aHUS survey were published online in May 2014. In total, the survey received 217 responses from 17 countries and was posted in six languages: English, French, Spanish, Italian, German and Dutch. aHUS Canada thanks those from the Canadian aHUS community for participating in this survey, and we are pleased to share the key findings.


  • 43% of respondents were 10 years of age or younger when they became ill
  • 77% of respondents have undergone genetic screening


  • 34% were initially diagnosed with TTP or HUS
  • 42% of respondents were correctly diagnosed in less than a week
    • Nearly a quarter took over a year to be correctly diagnosed with aHUS
    • 64% saw more than one doctor before receiving an accurate diagnosis
    • 54% of respondents say they have access to a national expert or specialist centre


  • 48% of respondents report currently being on Soliris
  • 13% of respondents had a transplant and are now on Soliris
  • 30% report not being on any treatment and being in remission
  • 75% report they are on their treatment of choice

Reimbursement of Soliris:

  • 41% of those on Soliris say their national health service pays for it
  • 20% of those on Soliris say their treatment is funded by private coverage