Doctors from Spain attended the International American Thoracic Society meeting, held in Washington DC, May 19 – 24th and presented an abstract case report of a single lung transplant in a 49-year-old male with Hermansky-Pudlak Syndrome. The transplant was conducted a...
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Join the HPS Network for patient day at the American Thoracic Society
A group from the HPS Network will be attending Meet the Experts, a patient program held at the American Thoracic Society by the Public Advisory Roundtable. This year’s theme will be “The Role of Patients in Advancing Treatments and Cures.” The seminar will be held...
Bag it for the Cure
Becky Nieves, a mother of a child with HPS and a board member of the HPS Network, is hosting an online fundraiser for the HPS Network with Mixed Bag Designs. Need a beach bag for a summer trip, or a backpack for the fall? Check out these colorful and stylish bags. Buy...
First Mothers’ Workshop held at the HPS Network Conference
The first afternoon-long Mothers’ Workshop was held at the 24th Annual HPS Network Conference at the Long Island Marriott in Uniondale, N.Y. in March. The workshop was hosted by Sheila Adamo, LCSW, CADC, a licensed clinical social worker who has conducted...
Hermansky-Pudlak Syndrome Network to attend American Thoracic Society International Meeting
The Hermansky-Pudlak Syndrome Network (HPS Network) will attend, and exhibit at, the American Thoracic Society’s International Meeting May 19 – 24th in Washington DC. The meeting attracts more than 16,000 respiratory medicine physicians, scientists, clinical...
Hermansky-Pudlak Syndrome Network featured in the New York Post
The Hermansky-Pudlak Syndrome was one of the rare diseases featured in a recent article in the New York Post by Molly Shea. Donna Appell, CEO of the HPS Network, and her daughter Ashley, were featured in the article that ran April 3rd, 2017. To see the article, go to:...
HPS Network launches the Silver for Silver initiative
The Hermansky-Pudlak Syndrome Network (HPS Network) will celebrate its 25th annual conference in 2018 and to help pay the bills, the Network is launching the Silver for Silver initiative. Supporters of the HPS Network are encouraged to save their silver change until...
25th Annual HPS Conference
Details Coming Soon!
HPS researchers gather for Meeting of the Minds
The third annual Meeting of the Minds brought together 38 doctors and researchers working to solve the mysteries of Hermansky-Pudlak Syndrome, March 11th at the Long Island Marriott in Uniondale, NY. The meeting was held in conjunction with the 24th Annual HPS Network...
HPS Network joins other patient groups to ask Trump to lift hiring freeze on NIH and FDA
The HPS Network joined 145 other patient organizations in signing a letter to President Trump asking him to lift a hiring freeze he instituted on the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) on Jan. 23, 2017. The letter was sent...