Patient Resources

Beginning CF Care: For Parents of Childrens with Cystic Fibrosis
This 50-page document was written to help parents begin to understand CF and manage their child’s illness.


Glossary of Cystic Fibrosis Terms
One of the most challenging parts of becoming the parent of a child with CF is learning all the medical terms related to the condition. This 28-page document will help parents learn and better understand everything from abdomen to zinc.


Working with your Insurance Company
This helpful handout will help parents of children with cystic fibrosis work with their CF care center and insurance company.


My Child's Cystic Fibrosis Action Plan
This action plan will help parents keep track of important information between visits to the doctor.


Fever Worksheet
This worksheet helps parents generate a plan of what to do if a child with CF has a fever.


Giving a Child with Cystic Fibrosis Medicine
How parents give medicine to children with CF depends on the type of medicine and the age of the child. Here are some hints.


Who to Call or Visit
This worksheet helps parents decide what they should do in a variety of situations related to caring for a child with cystic fibrosis.


My Child’s Usual Gastrointestinal (GI) Symptoms
Use this form to record your child’s usual CF gastrointestinal symptoms. Any increase in these symptoms may suggest that your child has a new or increased intestinal or malabsorption problem.


My Child’s Usual Respiratory Symptoms
Use this form to record your child’s usual CF respiratory symptoms. Any increase in these symptoms may suggest that your child has a new or increased respiratory problem.