PARTICIPATION REQUESTED: ‘Listening To You: A Program To Understand Your Journey!’(honoraria provided)

A Canadian sponsor has initiated and will fund a new program called Listening To You: A Program To Understand Your Journey! The Canadian Association of PNH Patients has been asked to contact patients across the country to participate in this program. If you are not a patient, we apologize for sending this to you, as we are trying to reach out as broadly as possible.

The Listening To You: A Program To Understand Your Journey! is a new platform that will enable PNH patients 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 PNH patient experience. The experiences and feedback collected by this research program will be shared with the Canadian PNH 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 PNH patient landscape.

Participation in this program will involve one, 60-90 minute one-on-one telephone interview. (Opportunities for additional feedback sessions may continue into 2015-2016.)

Respondents who qualify and satisfactorily complete this interview will receive $600.00 as a thank-you (honorarium) for their participation.

As mentioned, information will be collected via one telephone English-language interview session. Please note that the interview will be audio-recorded (as per MRIA best practices) therefore access to a phone line, uninterrupted interview time and ability to verbally communicate in English are required. All information (including audio recording) 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 interview sessions are being scheduled for February 2015, and will be conducted by Jane Maheu, Senior Research Director, b3Intelligence Inc. Interview times are from 8:00 a.m. to 10:00 p.m. Eastern Time. (So in Newfoundland/Labrador, that’s 9:30 a.m. to 11:30 p.m., while in B.C. interviews would run from 5:00 a.m. to 7:00 p.m.)

The Canadian Association of PNH Patients is calling on all Canadians living with this disease, and we welcome patients of all ages, regions and walks of life to contribute to this research, no matter the nature of their PNH journey.

If you are interested in participating, please email Jane directly at: and indicate which two or three days/times in the next 2-3 weeks when you will be available. If you are part of our Association’s email list, you may also be contacted directly by

The Canadian Association of PNH Patients 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.