Requesting participants for the aHUS Patient Input Program 2017

A program called the aHUS Patient Input Program was initiated in September 2014 and funded by Alexion Pharma Canada. Many aHUS patients and caregivers across Canada participated in the first three waves of interviews which were a great success. Thank you again for your help. The results of the 2014, 2015, 2016 interviews ​ have been summarized and the key findings are posted on our website:

aHUS Canada has been asked to contact patients and caregivers across the country to participate in the fourth- wave of this program. We encourage those who have not participated in this input program to do so, and those of you who have participated previously we encourage you to do so again as this program is designed to continue to follow the journey of aHUS families over time.

The aHUS Patient Input Program is a platform that enables aHUS patients and caregivers to share their experiences with regards to their disease and its treatment on an ongoing basis through one-on-one interview sessions. The overall intent of this program is to improve the aHUS patient and caregiver experience. The experiences and feedback collected by this research program will be shared with the Canadian aHUS community, and will help us to:

  • develop educational and information resources
  • provide support programs
  • improve the community’s awareness of available treatment options, and
  • advance our understanding of the Canadian aHUS patient landscape.

Participation in this program will involve two 30-45 minute one-on-one interviews over the next few months. Opportunities for additional feedback sessions are expected to continue into 2018.

Respondents who qualify will receive $100.00 for each interview session they participate in.

Information will be collected through a password protected website and telephone number, so access to a phone line and computer with internet is required. All information collected will be kept confidential and private in that no names will be used, however it will be presented and published in summary form.

Interviews for this session were scheduled for December and January but have been extended into February/March 2018 and will be conducted by John Bylok of Bylok and Associates.

If you are interested in participating, please email John at: and indicate any days and times when you will be available.

aHUS Canada thanks you in advance for your participation! We look forward to strengthen the fabric of our small but mighty patient community.

If you have any questions about the interviews please don’t hesitate to contact us.