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...
Newsroom - Articles
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:...
Missed the conference survey? Here’s your chance to help make the conference even better!
Attending conference can we a whirlwind of events. If you didn’t get a chance to complete the conference survey while you were at the conference, you can do it now online. Completing the survey helps us improve the conference in the future. It also helps us collect...
HPS Network celebrates its 26th Annual Conference
The HPS Network and community celebrated togetherness at the 26th Annual HPS Network Conference, held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. Themed, “Life is Sweet When We Are Together” the event attracted approximately 300...
Resolution introduced in Congress to support Orphan Drug Act
Representatives Butterfield and Bilirakis introduced House Resolution 242 celebrating the success of the Orphan Drug Act and calling for continued support of the legislation. Before the legislation there were only 34 FDA approved treatments for a rare disease. Today...
April 6th to be Hermansky-Pudlak Syndrome Awareness Day!
This year the Hermansky-Pudlak Syndrome community is celebrating the first-ever Hermansky-Pudlak Syndrome Awareness Day! The day is devoted to generating awareness of the syndrome, as well as awareness of the problems we must overcome to find better treatments and a...
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...