Two Opportunities for Input

CFF’s Community Voice recently circulated two calls for input from the CF community; one is a survey and the other is for focus groups. The announcements are set out below.

Medication Education in CF Care Survey

A team from the University of Arizona is conducting a survey about medication education in CF care centers. This survey is designed to help inform the CF community about perspectives regarding medication education for persons with CF and their families. For this project, they are specifically evaluating perspectives from adult persons with CF, caregivers of children with CF, and CF care teams (pharmacists, providers (MD, NP, PA, etc.), and nurse/nurse coordinators).

To learn more about the survey and participate, please click the link below by Tuesday, March 12th at 11:59 p.m., ET. Upon completing the survey, participants will have the option to enter a raffle for an Amazon gift card.

Complete Survey

Please note the Cystic Fibrosis Foundation is not involved in this project. For additional information or questions please contact the Principal Investigator, Hannah Phan, PharmD, at [email protected].

Patient-Family Advisory Board/Councils – Virtual Focus Groups

The CF Foundation will be hosting a series of virtual focus groups about patient-family advisory councils/boards in order to learn more about what these groups currently look like in the CF community and what they could look like in the future.

If you are a parent of someone living with CF and would like to share your thoughts on these groups, please sign up today. Please note that past participation in an advisory group is not required; anyone is welcome to join.

If you are interested in participating in a focus group or would like to provide feedback via email, please fill out the brief interest survey below by Sunday, March 3rd at 11:59 p.m., ET.

Take Interest Survey

Thank you for your time and consideration.

Best,
Kelsey Fredkin
Sr. Specialist, Community Engagement
Cystic Fibrosis Foundation