Funding the HPS Conference Focus Group

Save the Date! Aug 14, 2019 at 8:00 pm ET We’ve come a long way. Instead of looking for researchers and hoping they will be interested in HPS, we have some of the world’s leading minds in gene therapy and stem cell research working on HPS. We have promising candidate drugs that will hopefully soon advance to clinical trials. Now, we need to fund the conference. The conference isn’t just informative or fun. It’s the place where our researchers come together to compare notes and find ways to...

Building Your Village: HPS Network Webinar

Save the Date! Aug, 13, 2019 at 8:00 pm ET There are lots of times when those of us impacted by HPS, whether we are people with HPS or caregivers, need our community support systems. They say it takes a village, and we need our villages to help us along the way. This webinar will provide information about community resources to look for as well as tips for building your own village, or even major metropolitan area, to better navigate living and thriving with HPS.  Come to listen, or share your...

HPS Awareness and Fundraiser Event in Sparta, NJ

Join the Rodriguez family for their first annual HPS awareness and fundraising event, Aug. 17, in Sparta Township, NJ. The Rodriguez has one-year-old identical twin girls with HPS. Thirty percent of proceeds will go to the HPS Network, and the rest will go toward any current or future medical needs for Brooke and Brielle. The event will have a buffet dinner, DJ and cash bar. Auction baskets will also be at the event. Doors will open at 3:00 pm. To buy tickets or learn more, go to:...

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!

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 Hermansky-Pudlak Syndrome. The event will be held from 8:00 pm to 4:00 pm at the Courtyard by Marriott Isla Verde Beach Resort, 7012 Calle Avenue Boca de Cangrejos. To register, call: 1 (855) 754-1040.