Patient and Family Resources

Girl with a butterfly on her nose

Internet Resources

Having a wealth of information can be both a blessing and a curse. How do you determine which information is helpful and which is potentially harmful? The most important factor to consider when looking for information on the Internet is that your healthcare providers are still the ones that direct your health care program. It is not advised to make changes to your treatment plan based solely off information gathered from the Internet. Please discuss new findings with your health care provider before making any changes. Here are some sites we have reviewed and found to be among the most informative and trusted.

Cystic Fibrosis Foundation This organization is dedicated to providing families with support and information about recent developments, research and clinical trials, and legislative action.

Cystic Fibrosis Foundation – Minnesota Chapter Minnesota’s local CF chapter also provides families with support and information about recent developments, research and clinical trials, and legislative action.

Watch presentation: Transitioning to the adult cystic fibrosis clinic

Watch presentations from the CF Parent/Caregiver Education Day

Our Cystic Fibrosis Parent/Caregiver Education Day, held in October 2021, featured information about new treatments and therapies for cystic fibrosis and ways to help manage other related health issues. You can watch the Education Day presentations below.