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...

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 being held in conjunction with the “Rare Lung Diseases Week at the ATS” program-an educational activity designed to foster interaction between clinicans, patients, and patient advocates on lung and airway disorders. Where: Sheraton...

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...