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We are here to help people with CF get the insurance coverage they need. Hear how the Foundation helped the Cox family.

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Start An Advisory Group

Advisory Groups can play a major role in helping care centers improve the quality of care they provide. How do you start your own Advisory Group? First, consult with the staff at your care center about how the partnership would work and how you can help. Next, you’ll need to get others involved.

Use the following letter template to reach out to other families from your care center and spark interest in forming an Advisory Group. Arrange a start-up meeting for interested participants as soon as possible to build on the collective enthusiasm.  

Please note: Following this letter, there is an alternate opening paragraph if you would like to send the letter to people with CF instead of parents. In this case, it is also important for you to work closely with your care center to avoid the spread of germs. For adults with CF, consider having them join by phone or have an e-mail network with one person attending face-to-face meetings.

Click here to download the following sample letter.

Dear Fellow CF Parent:

I’m writing to tell you about an important new project at the CF care center that cares for our children. The project is a new Advisory Group, and it’s an exciting chance for you to take an active role in improving the delivery of CF care.

We won’t be outsiders looking in. Our Advisory Group will meet regularly to give advice and assistance to our care center. They want our input. After all, only we know what it’s like to receive care from them and to live with the daily challenges of CF.

The Advisory Group project has its roots in a report issued in 2001 by the Institute of Medicine called Crossing the Quality Chasm: A New Health System for the 21st Century. “Health care harms patients too frequently and routinely fails to deliver its potential benefits,” the authors warned, calling for a “fundamental sweeping redesign of the entire health system.”

The Cystic Fibrosis Foundation embraced the report’s recommendation to make chronic care “patient-centered.” That’s why Advisory Groups are forming at CF care centers around the country. Together, groups and care centers are working as partners to provide the kind of care that will make life better, and longer, for people with CF.

It’s time for our care center to join this movement!

No two Advisory Groups are exactly alike. More importantly, not all participants are alike. We can accommodate a wide variety of interests, energy levels and abilities to attend meetings. Our group will be task-oriented and take care to observe the applicable infection control guidelines with respect to contact between people with CF. The work will be enormously rewarding and will certainly generate fellowship and friendship among our local families.

Your participation is key. I hope you will join us in creating an Advisory Group – and improving the quality of care for people with CF.

If you have any questions or want any more information, please feel free to contact me at [CONTACT INFO][You can also use this space to announce initial meetings, etc.]



PS – You can learn more about other quality improvement efforts on the Cystic Fibrosis Foundation web site at:

Alternative Opening Paragraph for Non-Parent Audience:

Dear [NAME]:

I’m writing to tell you about an important new project at our CF care center. The project is a new Advisory Group, and it’s an exciting chance for you to take an active role in improving the delivery of CF care.

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