HPS Network attends Mount Sinai / CHOP ribbon cutting

Donna Appell, President and CEO of the HPS Network, and Ashley Appell, an adult with HPS, were on hand for the new joint Fetal Medicine Program created between the Children’s Hospital of Philadelphia (CHOP) and Mount Sinai hospitals. The hospitals also have an alliance for pediatric cardiac and oncology services. Both medical institutions are also home to bowel research on Hermansky-Pudlak Syndrome. The ribbon cutting was held at its new facility at the Mount Sinai Annenberg Building. The new...

HPS Network presents Grand Rounds at Metropolitan Hospital

Donna Appell, President and CEO of the HPS Network, and Ashley Appell, an adult with HPS, presented Grand Rounds to pediatric and genetics staff at New York’s Metropolitan Hospital on Friday, June 2, 2017. Donna Appell explained the basics of Hermansky-Pudlak Syndrome (HPS), caring for patients with HPS and how to identify a patient with HPS who might not be aware they are affected by the syndrome. Ashley Appell answered questions from those in attendance about her experiences living with HPS...

Deadline approaching for HPS/ATS research grant

Letters of Interest for the American Thoracic Society Foundation and Hermansky-Pudlak Syndrome Network Partnership research grant are due June 6th. LOI submission forms, and more information about the grant, can be found at: https://www.thoracic.org/professionals/research/research-program-portfolio/partner-grants-loi.php. The grant offers $40,000 per year for two years to an investigator interested in research that is directly relevant to the pulmonary fibrosis of Hermansky-Pudlak Syndrome....