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 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:...