The HPS Network joined 145 other patient organizations in signing a letter to President Trump asking him to lift a hiring freeze he instituted on the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) on Jan. 23, 2017. The letter was sent...
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...
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...
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. 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...