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.
Demographics:
- 43% of respondents were 10 years of age or younger when they became ill
- 77% of respondents have undergone genetic screening
Diagnosis:
- 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
Treatment:
- 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