Treasured HPS Network volunteer Ann-Delia Bayer passes away

Ann-Delia Bayer, a longtime volunteer with the HPS Network, passed away on Dec. 9th, 2017. She is survived by her husband Robert Bayer and her daughters Katrina and Sarah as well as her brother Timothy (Stacie) Valentine and his children Corrine and Jena. Bayer was actively involved in HPS Network events, even though no one in her family was affected by the syndrome. For a decade she managed the kids’ dance party on Friday night at the HPS Network conference. The party gives kids affected by...

Research Alert: HPS Network tracking medical issues, looking for HPSers with specific characteristics

Valerie Friedman RN and Director of Medical Affairs for the Hermansky-Pudlak Syndrome Network, is tracking several medical issues we’ve noticed among the HPS community. We DO NOT know if they are in any way related to HPS, but would like to collect data that, if significant, could be shared with HPS researchers. If you have any of these medical issues, please e-mail Valerie at vfriedman@hpsnetwork.org and let her know so that she can add it to your profile in our membership database:...

Room block reservations open for 25th Annual Conference

Make hotel reservations now to attend the 25th Annual HPS Network Conference, March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. Rooms are $154 a night plus tax with the room rate. The theme of this year’s conference is Our True Colors and the banquet dinner will be a celebration of our 25th (silver) anniversary! Don’t miss this historic, and informative, event. To make reservations online, go to: http://tinyurl.com/hps252018, or to make reservations by phone call: 516.794.3800....

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...

Center opens for HPS study in Chicago

Oyster Bay, NY – A study location for an observational study of Hermansky-Pudlak Syndrome has opened at Loyola University in the Chicago area. Hermansky-Pudlak Syndrome, or HPS, is a type of albinism that involves other health-related issues beyond low vision and pigmentation such as a bleeding disorder, and in some gene types, bowel and lung issues. The lung disease of HPS is called Pulmonary Fibrosis and causes a scarring of the lungs that, without a lung transplant, is ultimately fatal. HPS...

HPS researchers gather for Meeting of the Minds

The third annual Meeting of the Minds brought together 38 doctors and researchers working to solve the mysteries of Hermansky-Pudlak Syndrome, March 11th at the Long Island Marriott in Uniondale, NY. The meeting was held in conjunction with the 24th Annual HPS Network Conference. Chaired by Dr. Lisa Young and Dr. Bernadette Gochuico, the invitation-only and researcher-only meeting gave attendees a safe and collaborative environment to discuss unpublished research, communicate about novel...

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