The American Lung Association is asking patients with all forms of lung disease who are using, or have used, home oxygen to take a survey, the results of which, will be used to aid advocacy work in regard to access and quality of home oxygen. As patients with HPS, and...
Flor Otero, who received a double lung transplant in May, shared her story with the Highlands News-Sun and it was published in the June 18th edition of the paper. Otero was able to share about her surgery, raise awareness about organ donation as well as explain...
The HPS Network is offering a wallet-sized medical health alert card that has a QR code physicians or emergency personnel can scan to instantly be directed to information about HPS, treating bleeding and even some of the key standard-of-care medical papers they might...
Join the HPS Network and eat for the cure Saturday, Aug. 18 at Mamma Gina’s Pizzeria, 104 East Merrick Rd in Valley Stream, N.Y. The event will run from 4:00 pm to 9:00 pm. Mamma Gina’s Pizzeria will donate 20 percent of your bill to the HPS Network if you mention the...
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...
