Educational and Support Resources
Cystic Fibrosis Infection Control
Cystic Fibrosis Nutrition
Cystic Fibrosis Pulmonary Treatments
Inspire - The URMC CF Center Newsletter
View an archive of past issues.
Cystic Fibrosis Networking Websites
Better Days Ahead - Parenting and coping support
Kids Adjusting Through Support (KATS) - Provides free, compassionate, support and educational services to children and families coping with loss or serious illness.
Mental Health Association - Ideal for patients with chronic illness AND a mental health concern; parents can call themselves.
Crisis Nursery of Greater Rochester - Provides a safe, nurturing environment for children from birth to age 12 whose families are in crisis. For up to 72 hours, children can live at the nursery, cared for by trained staff.
What is Cystic Fibrosis?
Cystic fibrosis (CF) is a chronic condition in children and adults. It most often affects the lungs and digestive system of the body. Children with CF may have chronic lung infections and/or poor digestion of their food. Symptoms which are sometimes seen in CF but are also common in other illnesses may include:
A chronic cough
Frequent infections in the lungs
Difficulty gaining weight
Salty taste of the skin