Join us for an HPS field trip

The Muller Lab has invited the HPS community for a visit on June 24th to learn more about gene therapy and how the lab and the HPS Network are collaborating. The lab is working on solving the challenge of gene therapy in HPS. The event will be held at 10:00 am, at the University of Massachusetts Medical Center, 368 Plantation Street, Albert Sherman Center Level 9. You MUST RSVP for this event. Please RSVP to

Be a part of the Million Dollar Bike Ride!

Be a part of the Million Dollar Bike Ride! The HPS Network will have cyclists participating in the Million Dollar Bike Ride at Highline Park in Philadelphia on June 8th, 2019. The ride is hosted by the Penn Medicine Orphan Disease Center. Cyclists raise money to support their rare disease organizations. If you’d like to support our riders, you can donate at:  Stay tuned for more information about our riders!

First annual HPS Awareness Day a great success!

The first annual HPS Awareness Day went above and beyond expectations on April 6th, 2019 as people impacted by HPS around the world took advantage of the day to host fundraisers as well as generate awareness through social media activism. Some fundraisers were online events through facebook or online t-shirt sales, but some were in-person events such as a pizza party, a movie night and a lemonade stand. The day was conceived by Kristen Brantner, a board member of the HPS Network as well as the...

Meeting of the Minds tackles HPS research questions

A record number of researchers attended the 5th Annual Meeting of the Minds scientific meeting, held March 9 – 10 at the HPS Network Conference. In all 46 physicians and scientists, all working on various aspects of research related to Hermansky-Pudlak Syndrome, gathered to share findings and plot future goals. “It was amazing to watch so many great minds together,” said Donna Appell, Executive Director and Founder of the HPS Network, “It is exciting how quickly this meeting has grown, and how...