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.

Book created by kids in the HPS community available

A book illustrated by kids at the 26th Annual HPS Network Conference, under the organization, leadership and help of Sandra and Cassandra Mendez, is now available as an incentive for a $25 or more donation. What Makes Me Unique, Makes Me Rare can be obtained at: https://www.facebook.com/donate/397702131047949/10205561629716855/ The kids and teenagers attending the conference illustrated what they felt made them rare, and then Cassandra Mendez wrote the words and made the digital copy. Her mom,...

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...