Familial Pulmonary Fibrosis Genetic Counseling Program
Pulmonary fibrosis is a disease characterized by progressive scarring of the lungs, which robs patients of the ability to breathe. Most cases are of unknown cause, and are called Idiopathic Pulmonary Fibrosis or IPF. An estimated 10-15 percent of IPF patients have a form of the disease that runs in families, called familial pulmonary fibrosis. Recent research has identified two genetic mutations that are associated with familial pulmonary fibrosis, and tests for those mutations have recently become available to the public.
National Jewish Health collaborates with the Coalition for Pulmonary Fibrosis* to provide genetic counseling for familial pulmonary fibrosis patients. The genetic counseling program provides a qualified genetic counselor, who, by phone, discusses various issues surrounding the disease. These issues can include preparation for, and interpretation of, genetic tests and various life decisions, such as having children and planning for the future.
Experts recommend talking to a counselor prior to having any genetic tests so that people are prepared to learn the results.
For further information on the Familial Pulmonary Fibrosis Genetic Counseling Program or to speak with a genetic counselor, call 1-800-423-8891, ext. 1097.
*About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. Learn more about the Coalition for Pulmonary Fibrosis.
Learn more about pulmonary fibrosis.
