Cystic Fibrosis

Cystic fibrosis (CF) is a complex, inherited disease that affects many of the body’s mucous glands, leading to problems in the lungs and gastrointestinal tract including failure to absorb nutrients. The disease affects about thirty thousand people in the U.S. Although there is no cure, comprehensive care has led to improved prognoses for many people and research is providing new insights and new therapies.

The Joey O'Donnell Cystic Fibrosis Center at MassGeneral Hospital for Children is committed to providing first-class, individualized care for each patient. We have established a multidisciplinary team to provide preventive care, active management of lung health, nutrition support, and psychological support. Successful treatment is accomplished through frequent outpatient visits with the CF team, direct communication with families, and educational programs.

Comprehensive Services and a Multidisciplinary Team

The Cystic Fibrosis Center is staffed with a dedicated multidisciplinary team of cystic fibrosis specialists including:

• Physicians certified in pediatric pulmonology
• Nurses
• Nutritionists
• Respiratory therapists
• Social workers
• Pulmonary function specialists

The team is available to our patients at each visit. The other medical needs of our patients are assessed by a comprehensive group of pediatric specialists at MassGeneral Hospital for Children, including pediatric surgeons, endocrinologists, and hepatologists. Ear, nose, and throat specialists are available from the adjoining Massachusetts Eye and Ear Infirmary. In addition, MassGeneral Hospital for Children has active lung and liver transplant programs.

Transition Program

As children with cystic fibrosis get older, they have different needs. We encourage self-care and responsibility for healthcare and we partner with families to facilitate teenagers’ transition to self-care, which includes gradual transition to the adult Cystic Fibrosis Program. Massachusetts General Hospital is in the unique position to follow patients into adulthood and offer smooth continuity of care as they transition from a pediatric to an adult provider.

Infection Prevention

An important issue related to patient care involves preventing the spread of harmful bacteria. We have prevention protocols in place to protect our patients with cystic fibrosis.

Cutting-Edge Research

The Cystic Fibrosis Foundation has designated MassGeneral Hospital for Children a Cystic Fibrosis Research Center. Critical cutting-edge research forms the basis of therapeutic advances, and our program is involved in all major clinical trials.

A Tradition of Caring

At MassGeneral Hospital for Children, we know that the time of your child’s diagnosis and treatment is a very stressful one and we strive to provide an open, welcoming environment. We believe that no one knows a child as well as the parent does: parents, along with primary care providers, become our partners in a child's care and have an active voice in all treatment plans.