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!

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...

HPS community wishes NHLBI a Happy 50th

Attendees at the 26th Annual HPS Network Conference, held in Uniondale NY in March, created a video to wish the National Heart, Lung and Blood Institute (NHLBI) at the National Institutes of Health a happy 50th anniversary. NHLBI was pleased with the video and plans to use it at various events throughout the year. If you wish to follow the NHLBI through its 50th anniversary year, follow the hashtag #lung50. If you’d like to see the video, go to: https://youtu.be/1C1wwPzdeYY On April 9th...

Volunteer to share your HPS experience with medical students

  Global Genes and the Rare Compassion project are teaming up to match patients and families affected by a rare disease with medical students eager to understand our lives better. If you would be willing to share your HPS story, the ups and downs and real day-to-day experiences, then this might be an outreach volunteer experience for you! The project takes applications from patients all year, and matches medical students with patients quarterly based on geographical proximity. Because the...

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.