Enjoy a juicy steak and help us fund the cure, Sept. 25 between 4:00 pm to 9:00 pm at the Outback Steakhouse, 901 Route 73 South in Marlton, NJ. Tell the server you’re there to support the HPS Network, and a portion of your bill will benefit us. Enjoy some steak and...
Newsroom - Articles
HPS Multidisciplinary Clinic to be held in Mayaguez
A multi-disciplinary clinic for anyone with HPS will be held Oct. 20 at Mayaguez Medical Center in Puerto Rico. The clinic is free, and is a chance for children and adults with HPS to consult with a variety of physicians knowledgeable about Hermansky-Pudlak Syndrome....
HPS moms to gather for third annual Mothers’ Workshop at the HPS Network Conference
Mothers of children with HPS will gather for their third annual workshop Friday, March 8, 2019 at the 26th Annual HPS Network Conference. The HPS Network Conference will be held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. The Mother’s...
Girl Scout Troop donates to HPS Network
Kylee Brantner’s Girl Scout troop voted to donate left over funds from their year to the HPS Network in July. Kylee is a person with HPS and has done several HPS fundraisers over the years with her friends. The HPS Network is grateful to Girl Scouts of Western...
Share your experiences with spirometry testing
A group of healthcare professionals from the American Thoracic Society and the European Respiratory Society are working together to agree on the best and most appropriate spirometry testing methods. They are asking lung patients from around the world who have...
Share your experiences with home oxygen with the American Lung Association
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’s transplant story published in the Highlands News-Sun
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...
HPS Network offers wallet card with QR code
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...
Eat for the Cure at Mama Gina’s in Valley Stream, NY
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...
26th Annual HPS Network Conference to be held for families affected by HPS
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...