HPS Network joins other rare disease organizations in support of the RARE Act

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 Organization for Rare Disorders, in support of the legislation. The Rare Act of 2018 would: Increase rare disease research funding at the National Institutes of Health (NIH) by authorizing an additional $10 million each year for...

New lung transplant program opens in New York

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 down by other centers in the region. “I had been fighting this disease for years, trying to stay healthy for my husband and our two daughters, but I was losing hope,” says Cepeda. “Dr. Angel was the first to say he wouldn’t turn...

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 its membership to develop individualized plans for research participation. The process helps to identify interest in research participation, provide information about current research participation opportunities and identify any...

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 providers. The event will be held Saturday, April 21st from 9:00 am to 3:00 pm at the Sheraton Puerto Rico Hotel, 200 Convention Blvd, San Juan PR 0090. A light breakfast and complimentary lunch will be served. To RSVP, e-mail Donna...

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 assists families and their physicians access diagnostic testing, and provides education and other support services after diagnosis. “We never want anyone to test positive for HPS,” says Heather Kirkwood, Director of...

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. Lisa Young, M.D., is a physician-scientist focusing on research in genetic and interstitial lung diseases (ILD). Dr. Young’s research lab utilizes both laboratory-based and patient-oriented research approaches to study interstitial...

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