CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
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Learning that your baby has cystic fibrosis may come as a shock, especially if you do not have a family history of the disease, but you are not alone.
Starting solid foods is very important for the development and health of babies with cystic fibrosis.
At this age, you will want to start serving high-calorie finger foods and gradually boost calories with safe solid foods. It is important to create a routine and set time limits at mealtime.
Children with cystic fibrosis ages 3 to 7 learn by watching their family, parents, teachers, and friends. They like to be independent but need limits and structure. Have planned meals and snacks.
Quarterly visits to a CF Foundation-accredited care center are the foundation of your treatment plan. By partnering with your care team, you can also adjust your treatment plan as new therapies become available, or your needs change over time.
To help ensure your child's social, emotional, medical, and educational needs are being met at school, you may consider requesting an evaluation for an individualized education program or a 504 plan through your child's school.
When there is more than one person with CF in your school, it is essential that they be kept a minimum of 6 feet (2 meters) apart from each other. Germs can spread as far as 6 feet through droplets released in the air when people cough or sneeze.
As children with cystic fibrosis transition toward greater independence at school and at home, they will also take greater responsibility in managing their disease.