26th Annual HPS Network Conference to be held for families affected by HPS

  Families impacted by Hermansky-Pudlak Syndrome will gather for the 26th Annual HPS Network Conference, March 8 – 10, 2019, at the Long Island Marriott in Uniondale, N.Y. This year’s theme: “Life is Sweet When We Are Together.” The HPS Network Conference is a place for families, physicians and researchers with an interest in Hermansky-Pudlak Syndrome (HPS) from around the world to gather for fellowship, education and fun. The conference includes: Opportunities to meet and network with other...

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? This...

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...

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