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Two Opportunities for Input Regarding Your Care

CFF’s Community Voice has issued requests for input on two different aspects of CF care. Here are the announcements including links to the online surveys.

ENT Guidelines – Deadline November 8th

We are writing to inform you that, in collaboration with the CF Foundation, we will be developing ENT (otolaryngology) guidelines for individuals with CF. To help inform the scope of these guidelines, we kindly request that you complete the survey below:

Survey Link:

This survey takes approximately 5-10 minutes to complete, and the information gathered will be used to inform the scope of the ENT guidelines. The survey asks about your experience with ENT referrals and treatment. You may choose not to answer any or all questions. The survey will be distributed to individuals with CF and their family members, members of the CF care team, as well as ENTs. We are not collecting any identifying information. The survey will close on Friday, November 8, 2018.

Thank you for your consideration. If you have any questions and/or feedback about the survey, please feel free to e-mail Sarah Hempstead:

Patient or Family Advisory Council – Deadline November 18th

The CF Foundation is seeking to learn more about patient and family engagement at your CF care centers, specifically through your patient and family advisory councils/boards. We are hoping to learn what different activities these groups participate in and we would love to hear about your experience.

If you are interested in sharing about your council or board, please complete the following survey by Sunday, November 18th at 11:59 p.m., EST. 

Survey Link:

We encourage you to share this survey with others within the CF community.

We greatly appreciate your time and insight.

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