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...
Newsroom - Articles
Sanofi Genzyme awards Hermansky-Pudlak Syndrome Network a Patient Advocacy Leadership Award
The Hermansky-Pudlak Syndrome Network (HPS Network) was awarded a Patient Advocacy Leadership Award by Sanofi Genzyme to support the Network’s “Individualized Research Plan” (IRP) project. To prepare for future recruitment into drug trials, the Network is working with...
ATS Day in Puerto Rico
Hermanksy-Pudlak Syndrome Education Day About: The American Thoracic Society (ATS), the Hermansky-Pudlak Syndrome Network (HPS Network) and the San Juan City Hospital (Puerto Rico) presents a free one day education seminar on Hermansky-Pudlak Syndrome. This event is...
Hermansky-Pudlak Syndrome Education Day to be held in Puerto Rico
The American Thoracic Society (ATS), the Hermansky-Pudlak Syndrome Network (HPS Network) and the San Juan City Hospital Puerto Rico will offer a free one-day educational seminar for patients affected by Hermansky-Pudlak Syndrome, their families and health care...
HPS Network adds 48 new people with Hermansky-Pudlak Syndrome to registry
The HPS Network, a non-profit patient organization serving families affected by Hermansky-Pudlak Syndrome (HPS) added 48 new people with HPS to its registry between March 2017 and March 2018 as part of its Hundred People Search (H.P.S.) campaign. The HPS Network often...
Dr. Young to present on Science Sunday at the HPS Network Conference
Dr. Lisa Young, Associate Professor of Pediatrics, Medicine and Cell Biology at Vanderbilt University, will give an update on the HPS Centers through the Rare Lung Disease Consortium, as well as about her lab’s research, March 11, 2018 at the HPS Network Conference....
HPS Network waves registration fees for families in Puerto Rico
The HPS Network is waving registration fees for the 25th Annual HPS Network Conference, to be held March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. for families that live in Puerto Rico and come to the conference. Registration fees include: meals from...
Thanks for a successful Capital Campaign
The HPS Network is grateful to our Capital Campaign donors who made this year’s campaign the most successful yet! Like most non-profits, the HPS Network mails an annual request for donations to help support our work. The response this year was the best ever....
Send in your Silver!
For the past year, in celebration of the 25th Annual HPS Network Conference, members have collected their silver in change jars at home, and at local businesses. Renee McEvoy, CFO of the HPS Network, is asking that everyone send in the revenue from their change...
Families affected by Hermansky-Pudlak Syndrome to gather for 25th Annual Conference
Oyster Bay, N.Y. The Hermansky-Pudlak Syndrome (HPS) Network will hold its 25th Annual Conference March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. HPS is a type of albinism that involves low vision (usually legal blindness), a bleeding disorder, and...