Public Release: 

Consortium launched to research rare lung diseases

Loyola University Health System

MAYWOOD, Ill. -- Loyola University Medical Center is the only center in Illinois to join the newly launched Rare Lung Diseases Consortium, which will spearhead cutting-edge research on rare lung diseases.

The consortium is a unique collaboration among patient groups, researchers and the National Institutes of Health. Its mission is to conduct research into new diagnostic tests and treatments; provide clinical research training and focused clinical care; and educate patients, physicians, researchers and the public about rare lung diseases. There are 29 U.S. and 18 international clinics in the consortium.

The consortium is interested in more than 20 rare lung diseases, and initially will study these three: lymphangioleiomyomatosis (LAM), Hermansky-Pudlak sydrome (HPS) and pulmonary alveolar proteinosis (PAP).

LAM almost exclusively affects women. Symptoms of the debilitating disease include shortness of breath, chest pain, chronic cough and lung collapse. As the disease progresses, many patients must go on oxygen, and some require lung transplants. LAM can cause death from respiratory failure. Loyola will participate in two new LAM clinical research projects.

Loyola's LAM clinic treats more than 60 LAM patients, making it the largest LAM clinic in the Midwest. 'We manage the spectrum of LAM issues, ranging from minor shortness of breath to lung transplantation,' said Daniel Dilling, M.D., medical director of Loyola's lung transplantation program and LAM Clinic. HPS is a rare hereditary disorder that can cause a range of problems, including a form of pulmonary fibrosis (scarring of the lungs) that makes breathing increasingly difficult. Without a lung transplant, HPS typically is fatal within 10 years of onset. Loyola will participate in a study of how HPS develops over time.

PAP is characterized by the build-up of grainy material called surfactant in the alveoli (air sacs) of the lungs. This can lead to breathing problems and, in severe cases, respiratory failure. PAP can become progressively worse, remain stable or spontaneously clear in a small percentage of patients.

Loyola has the oldest and largest lung transplantation program in Illinois. Loyola has performed more than 800 lung transplants, by far the most of any center in the state. Loyola's multidisciplinary lung transplantation team provides patient-centered care and individualized treatment plans.

For information on Loyola's lung transplantation program, visit http://www.loyolamedicine.org/transplant/lung
For information on the Rare Disease Lung Consortium, visit https://www.rarediseasesnetwork.org/cms/rld/

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