People with Hermansky-Pudlak Syndrome (HPS) offered up stool and blood samples for a bowel research study being conducted by Dr. Louis Cohen, Assistant Professor at Mount Sinai Medical Center in New York. Samples were collected from any gene type of HPS and were...
Newsroom - Articles
HPS Brotherhood makes plans for 2017-2018
The HPS Brotherhood - a group of men who are supporting or caring for a loved one with HPS – met for the second time at the 24th Annual HPS Network Conference. “We had 18 men there. They were husbands, brothers, boyfriends, sons – it doesn’t matter. It was just great...
So you think you’d never use a cane – Presentation about orientation and mobility
Some people with visual impairments assume they would never benefit from using a white cane, or from orientation and mobility instruction, because they do have a fair amount of functional vision. Mike Desposati, an Orientation and Mobility Instructor from Helen Keller...
Dr. Roman to update the HPS community about HPS clinics in Puerto Rico
Dr. Jesse Roman will speak to the HPS community on Sunday, March 12th at the 24th Annual HPS Network Conference and provide an update about the progress of recently established clinics to serve people with Hermansky-Pudlak Syndrome in Puerto Rico. He will update us on...
Dr. Young to present an update on HPS involvement in the Rare Lung Disease Consortium
Dr. Lisa Young from Vanderbilt University will give a presentation updating the Hermansky-Pudlak Syndrome community about HPS involvement in the Rare Lung Disease Consortium at the 24th Annual HPS Network Conference, to be held March 10 – 12, at the Long Island...
Kevin O’Brien to present the basics of living with HPS at HPS Conference
Kevin O’Brien, Associate Investigator for the HPS protocols at the National Institutes of Health, will present “HPS 101” at the 24th Annual HPS Network Conference, to be held March 10 – 12, at the Long Island Marriott in Uniondale, NY. Thjs is a perfect session for...
Dr. Merideth to present on women’s health issues related to Hermansky-Pudlak Syndrome at the 2017 HPS Network Conference
Dr. Melissa Merideth will meet with those interested in learning more about how women’s health issues are impacted by Hermansky-Pudlak Syndrome at the 24th Annual HPS Network Conference, to be held March 10 – 12, at the Long Island Marriott in Uniondale, N.Y. Her...
Dr. Gahl to present an overview of HPS research at the 24th Annual HPS Network Conference
Dr. William Gahl will present an overview and update of research on Hermansky-Pudlak Syndrome at the 24th Annual HPS Network Conference, to be held March 10 – 12 at the Long Island Marriott in Uniondale, NY. Dr. Gahl’s presentation will be the morning of March 12th....
Dr. Cohen will present about the GI complications of Hermansky-Pudlak Syndrome at the HPS Network Conference
Dr. Louis Cohen will give a presentation on the gastrointestinal complications of Hermansky-Pudlak Syndrome (HPS) at the 24th Annual HPS Network Conference on March 12, 2017, at the Long Island Marriott in Uniondale, NY. Dr. Cohen is an Assistant Professor and...
Respiratory therapists to teach harmonica therapy at HPS Network Conference
Respiratory therapists at Holy Name Medical Center are using harmonicas to help patients with chronic lung diseases breathe better. They will attend the HPS Network Conference on Saturday, March 11th, and offer a short course on how to use playing the harmonica to...