Update the HPS Network on new developments in your health history

  Since you registered with the HPS Network, have you updated us about your health history? Keeping us up to date on major developments helps us find you should there be a research development or opportunity that might be applicable to your situation. Have you, for example, learned your gene type? Have you developed any other health issues such as GI complications or lung disease? Have you developed other health issues you might assume are not related to HPS such as arthritis or Lupus?...

Find the right opportunity to participate in research

Without research, we will never find better treatments, and someday, a cure for HPS. If you would like to participate in HPS research let us know you are interested. There may or may not be an opportunity currently that is the right fit, but it helps if we know you want to participate should the right opportunity come along. You can e-mail Valerie Friedman, Director of Medical Affairs and let her know you’d like to check in to see if there is the right opportunity for you. Her e-mail address...

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...

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, their siblings and the children of adults with HPS, about being rare. The books will then be sold as a fundraiser. They already have eight 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...