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Pulmonary Alveolar Microlithiasis patients, families, and caregivers are encouraged to join the NIH Rare Lung Diseases Consortium Contact Registry. This is a privacy protected site that provides up-to-date information for individuals interested in the latest scientific news, trials, and treatments related to rare lung diseases. [citation needed]
Not all types of interstitial lung disease that occur in adults occur also in children, and vice versa. [4] [5] The group of disorders is heterogenous, and there are different definitions of what exactly should be classed as a ChILD disorder. [1] Childhood interstitial lung disease is a serious condition, with high morbidity and mortality.
The following is a timeline of the Rare Diseases Clinical Research Network: As a result of the Rare Diseases Act of 2002, on February 27, 2003, the ORDR (in conjunction with the National Center for Research Resources (NCRR), the General Clinical Research Consortium (GCRC) Program, and other NIH Institutes) requested applications for a Rare Diseases Clinical Research Network.
Merck said its drug met the main goal of significantly reducing the time to disease worsening, lung transplantation or death in a late-stage study of 172 patients with advanced stages of the ...
(Reuters) -Savara said on Wednesday its experimental therapy met the main goal of a late-stage trial by improving a measure of lung function in patients with a rare disease that causes breathing ...
Pulmonary alveolar proteinosis (PAP) is a rare lung disorder characterized by an abnormal accumulation of surfactant-derived lipoprotein compounds within the alveoli of the lung. The accumulated substances interfere with the normal gas exchange and expansion of the lungs, ultimately leading to difficulty breathing and a predisposition to ...
Any disease that impacts 200,000 people or less in the U.S. is classified as a rare disease. The rare disease community is a close-knit group of patients, parents and specialists determined to ...
The European Consensus Guidelines on the Management of Respiratory Distress Syndrome highlight new possibilities for early detection, and therefore treatment of IRDS. [8] The guidelines mention an easy to use rapid point-of-care predictive test that is now available [ 9 ] and how lung ultrasound, with appropriate training, expertise and ...