2016 aHUS Global survey

The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, launched a worldwide survey of aHUS patients and caregivers to mark Rare Disease Day 2016 (29 February).  Members within the aHUS Alliance think meaningful information from the 2016 aHUS global poll can provide researchers, clinical trial investigators and industry a better perspective of how to reach physicians and their patients.  The survey also was designed to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world.

aHUS Canada is encouraging patients and caregivers to participate in the 2016 survey. The more patients that are participating in the 2016 aHUS global poll, the better understanding there will be about the challenges of aHUS such as barriers to diagnosis, access to treatment, availability of genetic testing, need for increased research efforts, participation in registries and clinical trials, and better/more information about aHUS.

Please take a few minutes to fill out the 2016 aHUS global survey.

A similar effort was conducted in partnership with Rare Connect in 2014.
To access 2014 RareConnect aHUS global poll charts and graphs, click HERE.
To view Dr. Tim Goodship’s webinar on interpreting 2014 RareConnect aHUS global  click HERE to view Dr. Goodship’s webinar. (with links to slides and poll assets)

Thank you for making a difference in the lives of aHUS patients globally.