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The HPS Network joins other patient advocates and the American Thoracic Society for Hill Day

Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome Network, recently joined other patient advocates with an interest in lung disease as well as representatives from the American Thoracic Society on Capitol Hill to speak to members of Congress about a variety of issues affecting lung disease patients.


The group asked Congress to pass a resolution recognizing 2010 as the Year of the Lung. Lung disease organizations from around the world have already designated 2010 as the Year of the Lung in hopes of generating greater public awareness of lung health issues.


The advocates also spoke to members of Congress about the need for greater funding for research at the National Institutes of Health, the Center for Disease Control and the Veterans Administration.

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