Klein hosts fundraiser at Bertucci’s

Friends and supporters of Amber Klein ate for the cure in May at Bertucci’s Italian Restaurant in Newark, DE. Bertucci’s is particularly known for its brick oven pizza. “We were really lucky that the restaurant, especially one of the waitresses, was so nice to us,” says Amber Klein, “It really helped make the event a success.” Bertucci’s has locations in different parts of the country and all have a program to help non-profits raise money. Those interested in hosting a similar fundraiser need...

HPS Network facilitates research at its annual conference

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 Director of the HPS Network, “We were able to work with our members, and the researchers, to overcome those challenges and make this happen.” People with HPS are visually impaired, and thus to ensure informed consent, consent forms...

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...

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