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...
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...
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...
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...
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...