NEWSROOM

Blood and stool samples for five different protocols were collected within the span of two hours at the HPS Network 25th Annual Conference, held March 9 – 11 in Uniondale, N.Y. “This project had several logistical challenges,” says Valarie Friedman, RN and Medical...

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...

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...

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...

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...

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...

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. 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....

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...

  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....

  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...

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...

Part of the HPS Network team attending the American Thoracic Society (ATS) meeting in Washington DC in May joined members of the ATS to rally for issues of importance to patients with lung diseases on Capitol Hill. Nancy Lee, board member of the HPS Network, Donna...

Kids may dream about running away to be in the circus, but kids from the Hermansky-Pudlak Syndrome (HPS) community will get to learn some circus skills at the 25th Annual HPS Network Conference, to be held March 9 – 11, 2018 at the Long Island Marriott in Uniondale,...

Dr. Konstantinos D. Alysandratos, MD, PhD, will present on Science Sunday to the HPS community at the 25th Annual HPS Network Conference, March 9 – 11, at the Long Island Marriott in Uniondale, N.Y. His presentation will help us understand what different types of stem...

The HPS Network is looking for volunteers with HPS types 3 or 6 to participate in a hematology study. Participation involves having blood drawn and then shipped to the researcher performing the study. To learn more, contact HPS Network Medical Director Valerie...

  Approximately 80 runners and walkers participated in A Run Through History in Oyster Bay, NY in October, 2017. The event was a fundraiser for the HPS Network and another Oyster Bay, NY-based non-profit Peerpals.org. Peerpals.org helps preschoolers with...

Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome (HPS) Network, and her daughter Ashley Appell, spoke to a class of soon-to-be genetic counselors at Sarah Lawrence College in early December. The focus of the class was genetics in pediatrics. Donna...

Ann-Delia Bayer, a longtime volunteer with the HPS Network, passed away on Dec. 9th, 2017. She is survived by her husband Robert Bayer and her daughters Katrina and Sarah as well as her brother Timothy (Stacie) Valentine and his children Corrine and Jena. Bayer was...

The HPS Network attended the Pulmonary Fibrosis Summit Nov. 10 – 12 in Nashville, TN. The summit was organized by the Pulmonary Fibrosis Foundation and featured tracks for patients and caregivers, as well as medical professionals. “The content at the Pulmonary...

The HPS Network has joined with the National Organization of Rare Disorders (NORD) and more than 200 rare disease organizations to oppose repeal of the Orphan Drug Tax Credit within the proposed Tax Cuts and Jobs Act. This tax credit is one of the only a few...

The Hermansky-Pudlak Syndrome Network (HPS Network) has formed a collaboration with the Rare Lung Disease Research Consortium to accelerate research on Hermansky-Pudlak Syndrome. “We are very excited about this project that will enhance our research efforts on the...

Valerie Friedman RN and Director of Medical Affairs for the Hermansky-Pudlak Syndrome Network, is tracking several medical issues we’ve noticed among the HPS community. We DO NOT know if they are in any way related to HPS, but would like to collect data that, if...

Please make sure to update your contact information with the HPS Network! We know many families have relocated, even temporarily, because of Hurricane Maria. If we can’t find you, we can’t reach out to you with any developments that might be helpful or important....

The HPS Network’s Capital Campaign will be mailed in early December. This is our annual general fundraising appeal mailing. Most charities do this, and for most, it is a major part of their budgets. This year the HPS Network lost one of our major fundraisers. It is...