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 data we need to try to attract grant funding and sponsorships to offset costs. Please complete the survey here: https://www.surveymonkey.com/r/conferencesurvey  

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 people affected by the Hermansky-Pudlak Syndrome (HPS) type of albinism, their families, physicians, interested researchers and supporters. Attendees shared stories about living with HPS, listened to medical experts explain key points...

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 there are more than 750 and counting. More than 90 percent of rare diseases are still waiting for an FDA approved treatment. Please ask your Congressional representatives to support the resolution.

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 cure. Keep checking the HPS Network social media for the launch of our awareness ribbon. We hope you will also support our online social media campaign. The HPS Network’s facebook page is: https://www.facebook.com/hpsnetwork/ You...

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 Bike Ride