Alexion Pharma Canada initiated and funded a new program called the aHUS Patient Input Program in September 2014. Many aHUS patients and caregivers across Canada participated in the first wave of interviews which were a great success. Thank you again for your help. The results of these interviews have been summarized and key findings were presented at the annual aHUS Canada Patient Conference in May 2015 and will also be made available on our website.
aHUS Canada has been asked to contact patients and caregivers across the country to participate in the second- wave of this program. If you did not participate last year please do so this year, and if you helped out last year please 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
- 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 six months. Opportunities for additional feedback sessions are expected to continue into 2016-2017.
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 are being scheduled for June and early July, and will be conducted by John Bylok of Bylok and Associates.
If you are interested in participating, please email John at: firstname.lastname@example.org 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.