Oyster Bay, New York – The Hermansky-Pudlak Syndrome Network (HPS Network) awarded the American Thoracic Society (ATS) its World of Difference award at the 17th annual HPS Network Conference in Uniondale, New York. The award recognizes the tireless work on the part of the ATS to advocate for the needs of patients with lung disease.
Graham Nelan, Deputy Executive Director, Program and Development and Courtney White , Manager, ATS Research Program and Public Advisory Roundtable from the ATS, were on hand at the HPS Network’s annual gala dinner to accept the award.
The World of Difference Award honors those whose advocacy work has benefited people affected by Hermansky-Pudlak Syndrome. HPS is a rare form of albinism that also involves a bleeding disorder, and other health problems. Those with HPS types 1, 2 and 4 develop pulmonary fibrosis, a scarring of the lungs, often at a young age. Currently there is no treatment for pulmonary fibrosis and many of those with HPS pass away from the lung disorder in their 30s to 50s.
The HPS Network and the ATS are also both celebrating 2010 as the Year of the Lung to bring attention to the need for more research and better treatments for a variety of lung diseases. Lung diseases are the fourth leading cause of death of the United States.
Founded in 1905 as the American Sanatorium Association to prevent, control and treat tuberculosis, the ATS was renamed the American Trudeau Society in 1938 before becoming known in 1960 as it is today. As a leading society of healthcare professionals focusing on pulmonology, critical care and sleep medicine, the ATS has more than 15,000 members, including: physicians, research scientists, nurses and other allied healthcare professionals, 25 percent of whom reside in countries other than the U.S..
The Hermansky-Pudlak Syndrome Network was founded in 1992 and incorporated in 1995. The organization maintains a patient registry of nearly a thousand patients affected by the syndrome. It offers support and information to affected families as well as advocates for medical research to one day find a cure.