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 info@hpsnetwork.org.

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: https://www.hpsnetwork.org/million-dollar-bike-ride-2019/  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.

Join the HPS Network at Outback Steakhouse to eat for the cure

Enjoy a juicy steak and help us fund the cure, Sept. 25 between 4:00 pm to 9:00 pm at the Outback Steakhouse, 901 Route 73 South in Marlton, NJ. Tell the server you’re there to support the HPS Network, and a portion of your bill will benefit us. Enjoy some steak and lobster, or some Queensland chicken and shrimp pasta. Or, maybe a salted caramel cookie skillet for dessert. Yummy!

HPS Multidisciplinary Clinic to be held in Mayaguez

A multi-disciplinary clinic for anyone with HPS will be held Oct. 20 at Mayaguez Medical Center in Puerto Rico. The clinic is free, and is a chance for children and adults with HPS to consult with a variety of physicians knowledgeable about Hermansky-Pudlak Syndrome. There are a limited number of appointments available, so don’t wait too long to make yours. Limited transportation assistance is available. Physician experts will include: Pulmonary – Dr. Monia Egozcue, Dr. Rosa Roman and Dr....