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...
Newsroom - Articles
Sabrina Sakoda to speak about her work with the film RARE in Japan
Sabrina Sakoda, president and founder of Dream Bridge, will be at the 2020 HPS Network Conference to talk about her work screening RARE around Japan. Sakoda raised the money to have RARE, a documentary about a drug trial to treat Hermansky-Pudlak Syndrome, translated...
HPS Network outreaches at 2019 American Thoracic Society International Meeting
A team from the HPS Network attended the American Thoracic Society (ATS) Annual Meeting, held May 17 – 22 in Dallas. The group was able to interact with more than 14,000 lung physicians, researchers, and representatives from pharmaceutical companies, at the HPS...
HPS Network partners with the ATS Foundation to fund another cycle of HPS research grants
Thanks to the hard work of our members and donors, the HPS Network will be able to partner again with the American Thoracic Society (ATS) Foundation to fund another HPS research grant. The $40,000 per year runs for two years and is funded half by the HPS Network, and...
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...
Volunteer to share your HPS experience with medical students
Global Genes and the Rare Compassion project are teaming up to match patients and families affected by a rare disease with medical students eager to understand our lives better. If you would be willing to share your HPS story, the ups and downs and real...
HPS Network and ATS hold education day in Puerto Rico
The HPS Network and the American Thoracic Society (ATS) are partnering to offer a Patient Education Day April 27th in Carolina, Puerto Rico. The event will offer information about the pulmonary fibrosis of HPS as well as many other aspects of living with...
Book created by kids in the HPS community available
A book illustrated by kids at the 26th Annual HPS Network Conference, under the organization, leadership and help of Sandra and Cassandra Mendez, is now available as an incentive for a $25 or more donation. What Makes Me Unique, Makes Me Rare can be obtained at:...