Living on the frontlines

This is my friend Diana singing Karaoke at the HPS Network 20th Annual Conference. She is currently trying to get on the lung transplant list. God grant her the new lungs to keep singing like this!!!!! 

The Hermansky-Pudlak Syndrome (HPS) Network exhibited at the SOMOS New York Conference, March 22 – 24th in Albany, NY. SOMOS is an event designed to create opportunities to increase Puerto Rican participation in the public policy making process. While at the event, the HPS Network made several strategic contacts as well as increased awareness of HPS, and the needs of the HPS community, in the public policy arena. Read more at: https://www.hpsnetwork.org/en/news/2013-03-25/hps-network-exhibits-at-somos

We've registered our first new HPSer for the coming year - 99 to go on this year's Hundred People Search! 

Dr. Bernadette Gochuico was presented with the Hermansky-Pudlak Syndrome Network’s Doctor of the Year Award at the 20th Annual HPS Conference. The award recognizes her work to try to find treatments for the pulmonary fibrosis of HPS as well as her care of HPS patients at the NIH Clinical Center. She is an Attending Pulmonologist at the National Human Genome Research Institute, National Institutes of Health. She is primarily interested in the mechanisms of pulmonary fibrosis. Her clinical protocols and projects focus on inherited forms of fibrotic lung disease, including HPS. To learn more, go to: http://www.hpsnetwork.org/en/news/2013-03-19/gochuico-honored-as-doctor-of-the-year