Families impacted by Hermansky-Pudlak Syndrome will gather for the 26th Annual HPS Network Conference, March 8 – 10, 2019, at the Long Island Marriott in Uniondale, N.Y. This year’s theme: “Life is Sweet When We Are Together.” The HPS Network Conference is a...
Newsroom - Articles
Update the HPS Network on new developments in your health history
Since you registered with the HPS Network, have you updated us about your health history? Keeping us up to date on major developments helps us find you should there be a research development or opportunity that might be applicable to your situation. Have you,...
Find the right opportunity to participate in research
Without research, we will never find better treatments, and someday, a cure for HPS. If you would like to participate in HPS research let us know you are interested. There may or may not be an opportunity currently that is the right fit, but it helps if we know you...
Dr. William Gahl receives Lifetime Achievement Award from the HPS Network
Dr. William Gahl, Clinical Director of the National Human Genome Research Institute, Head of the Undiagnosed Diseases Program and Senior Investigator, Medical Genetics Branch at the National Institutes of Health, was awarded the Lifetime Achievement Award by the...
HPS Network exhibits at New York Thoracic Society
The HPS Network exhibited at the annual meeting of the New York Thoracic Society, held March 23-24, 2018 at the Westchester Medical Center in Valhalla, N.Y. Exhibiting at this event gives the HPS Network a chance to reach out to pulmonologists in New York to increase...
HPS Network Supports the 2018 FASEB Science Research Conference on “The Lung Epithelium in Health and Disease”
Oyster Bay, NY – The Hermansky-Pudlak Syndrome Network (HPS Network) donated $5,000 to the 2018 Federation of American Societies for Experimental Biology (FASEB) Science Research Conference on “The Lung Epithelium in Health and Disease.” The FASEB conference will be...
Kids write about rare to raise money for the HPS Network
Becky Nieves and Sandra Ocasio, both mothers of someone with HPS, are organizing a fundraising project and they’d like your child’s help. They are creating a 15-page book, written and illustrated by kids with HPS, their siblings and the children of adults with HPS,...
Klein hosts fundraiser at Bertucci’s
Friends and supporters of Amber Klein ate for the cure in May at Bertucci’s Italian Restaurant in Newark, DE. Bertucci’s is particularly known for its brick oven pizza. “We were really lucky that the restaurant, especially one of the waitresses, was so nice to us,”...
HPS Network facilitates research at its annual conference
Blood and stool samples for five different protocols were collected within the span of two hours at the HPS Network 25th Annual Conference, held March 9 – 11 in Uniondale, N.Y. “This project had several logistical challenges,” says Valarie Friedman, RN and Medical...
HPS Network joins other rare disease organizations in support of the RARE Act
Congressmen Andre Carson (D-IN) and Ryan Costello, (R-PA) have introduced the Rare disease Advancement, Research and Education Act (H.R.5115) to the U.S. House of Representatives. The HPS Network has joined more than 100 other patient organizations and the National...