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Giving Tuesday Now

HPS Network Responds to Urgent COVID19 Need with a gratitude campaign of online giving, Joining #GivingTuesdayNow in Global Day of Giving and Unity. Go Fund Me Donation Page for Giving Tuesday Now We hope that this message finds you all safe during these trying...

COVID-19 Information

The HPS Network is closely monitoring the rapidly evolving developments regarding COVID-19. The World Health Organization has officially declared COVID-19 as a pandemic. Read our PDF for more details.

Christmas Jazz raises money for the HPS Network

JoAnn Criblez and The Jingle Boys entertained an audience of HPS Network supporters at Jingles and Jazz, held Dec. 12 at the Tilles Center Atrium, Long Island University Post. The fundraiser to benefit the HPS Network featured a range of holiday favorites, mostly...

HPS Network visits the Kotton Lab

The HPS Network visited the Kotton Lab in Framingham, Mass in July to learn more about how the lab is using stem cells derived from the blood of people with HPS to find clues to treat the lung disease of HPS. The lab collected blood samples at the HPS Conference two...

Team Brantner outreaches at genetics conference

The Brantner family manned an HPS Network booth at the Annual Clinical Genetics Meeting, April 1-2, 2019 in Seattle. They spoke with people working directly with patients in genetics departments across the country about HPS, how to test for HPS and the services...

HPS community wishes NHLBI a Happy 50th

Attendees at the 26th Annual HPS Network Conference, held in Uniondale NY in March, created a video to wish the National Heart, Lung and Blood Institute (NHLBI) at the National Institutes of Health a happy 50th anniversary. NHLBI was pleased with the video and plans...

Million Dollar Bike Ride 2019

Registration is now open for the Million Dollar Bike Ride. Please click below on Read More for more details. Saturday, June 8th, 2019 at 7:30 AM. Highline Park, 31st Street and Chestnut. To register please go to MillionDollarBikeRide.org. Donate to 2019 Million Dollar...

Puerto Rican Senate to hold hearing on Bill 1127

The Puerto Rican Senate will hold a hearing to consider Bill 1127 that would make changes in coverage for those with Hermansky-Pudlak Syndrome (HPS) and other types of albinism that are insured by Reforma, the island’s public health care coverage. Advocates for HPS on...