Requesting participants for the aHUS Patient Input Program (HONORARIA PROVIDED)

Alexion Pharma Canada has initiated and will fund a new program called the aHUS Patient Input Program. aHUS Canada has been asked to contact patients and caregivers across the country to participate in this program.

The aHUS Patient Input Program is a new platform that will enable 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-minute one-on-one interviews over the next six months. Opportunities for additional feedback sessions may continue into 2015-2016.

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.

The first sessions are being scheduled for late August and early September, 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 in the next 2-3 weeks when you will be available.

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