HPS Network launches Puerto Rican Relief Fund

The HPS Network has set up a Puerto Rican Relief Fund to help Puerto Rico, an island devastated by the ravages of Hurricanes Irma and Maria. The island is home to the largest population of families affected by Hermansky-Pudlak Syndrome, a genetic disorder that involves albinism, low vision and a bleeding disorder. Depending on the gene involved, it can also cause digestive disease and/or pulmonary fibrosis (a fatal scarring of the lungs). The HPS Network has worked in Puerto Rico for many...

Results from the 2017 HPS Network Conference Survey

The HPS Network would like to thank the conference attendees who completed the post conference survey. We had an 11 percent response rate. Here is a peek at some of the results we will be able to share with conference funders and supporters: 91 percent reported they learned something at conference they didn’t know before attending the event. 94 percent reported they learned something they will share at a future appointment with a medical provider. 100 percent reported they learned something...

HPS Community “Tunes in” for 24th Annual Conference

Nearly 300 people with HPS, their families and HPS researchers, met in Uniondale, N.Y. in March for the 24th Annual HPS Network Conference at the Long Island Marriott. The theme, Tune in the Network! The weekend was kicked off by a first-ever Mothers’ Workshop, given by Sheila Adamo, LCSW CADC. Adamo is the mother of a child with albinism, and now has a company doing workshops for the parents of children with special needs. While the moms were getting to know each other, the rest of their...

Appell recognized by the governor of Delaware

Donna Appell, President and Founder of the HPS Network, was recognized by a special proclamation by Governor John Carney and Lieutenant Governor Bethany Hall-Long of Delaware for her work on behalf of people affected by Hermansky-Pudlak Syndrome, as well as those with rare diseases. The proclamation was presented to her at the 24th Annual HPS Network Conference by Jeff and Amber Klein from Delaware. It reads, in part, “Over the course of her career, Mrs. Appell has been guided by her passion...

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