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,...
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,”...
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...
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...
A person with Hermansky-Pudlak Syndrome (HPS) was the first person to receive a lung transplant at NYU Langone Transplant Institute, a newly opened transplant program in New York City. Wanda Cepeda received her double lung transplant Feb. 10th. Cepeda had been turned...
