Dr. William Gahl receives Lifetime Achievement Award from the HPS Network

Dr. William Gahl, Clinical Director of the National Human Genome Research Institute, Head of the Undiagnosed Diseases Program and Senior Investigator, Medical Genetics Branch at the National Institutes of Health, was awarded the Lifetime Achievement Award by the Hermansky-Pudlak Syndrome Network at its 25th annual conference in March, 2018. Dr. Gahl started clinical research into HPS at the NIH back in the early 90s by first studying Ashley Appell, the index case for HPS. He then opened the...

HPS Network exhibits at New York Thoracic Society

The HPS Network exhibited at the annual meeting of the New York Thoracic Society, held March 23-24, 2018 at the Westchester Medical Center in Valhalla, N.Y. Exhibiting at this event gives the HPS Network a chance to reach out to pulmonologists in New York to increase awareness of HPS, and to make them aware of the services the HPS Network can offer their patients. “It’s an honor to be at this event, and to support the New York Thoracic Society in any way we can,” says Donna Appell, Executive...

HPS Network Supports the 2018 FASEB Science Research Conference on “The Lung Epithelium in Health and Disease”

Oyster Bay, NY – The Hermansky-Pudlak Syndrome Network (HPS Network) donated $5,000 to the 2018 Federation of American Societies for  Experimental Biology (FASEB) Science Research Conference on “The Lung Epithelium in Health and Disease.” The FASEB conference will be held, July 29 – August 3, 2018 in Olean, NY.   “We are delighted to be able to support the work of this conference, and the researchers who will be attending,” said Donna Appell, Executive Director and Founder of the HPS Network,...

Kids write about rare to raise money for the HPS Network

Becky Nieves and Sandra Ocasio, both mothers of someone with HPS, are organizing a fundraising project and they’d like your child’s help. They are creating a 15-page book, written and illustrated by kids with HPS or their siblings, about being rare. The books will then be sold as a fundraiser. They already have three submissions, but would love to have more! If you and your child 12 or under would like to participate here is what you need to do: Ask your child to draw two or three pages...

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...

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