Please make sure to update your contact information with the HPS Network! We know many families have relocated, even temporarily, because of Hurricane Maria. If we can’t find you, we can’t reach out to you with any developments that might be helpful or important....
Newsroom - Articles
Capital Campaign will go out in December
The HPS Network’s Capital Campaign will be mailed in early December. This is our annual general fundraising appeal mailing. Most charities do this, and for most, it is a major part of their budgets. This year the HPS Network lost one of our major fundraisers. It is...
HPS community attends patient day at the American Thoracic Society Annual Meeting
A group from the HPS Network attended Meet the Experts, a patient program held at the American Thoracic Society’s annual meeting by the Public Advisory Roundtable in May. This year’s theme was “The Role of Patients in Advancing Treatments and Cures.”...
HPS Network sends medical supplies to Puerto Rico
The HPS Network raised nearly $3,500 to help with relief efforts in Puerto Rico after hurricanes Maria and Irma. After being in contact with some of our friends in the medical community regarding what was needed, the Network purchased medical supplies and sent them,...
Singing camp raises money for HPS
Joanne Criblez’s summer camp voice students gave a concert to raise money and awareness for Hermansky-Pudlak Syndrome (HPS) Thursday, Aug. 10th at the LIU-Post Hillwood Commons Theatre, The performance, “A Night At The Movies Summer Cabaret” and featured music from...
Coach Grill and Tavern raises funds for the HPS Network
The Coach Grill and Tavern in Oyster Bay, N.Y. raised funds for the HPS Network by selling t-shirts at their recent pig roast anniversary party. They also recently made the HPS Network the recipient of donations earned through the cocktail of the month! The...
HPS Network launches Puerto Rican Relief Fund
The HPS Network has set up a Puerto Rican Relief Fund to help Puerto Rico, an island devastated by the ravages of Hurricanes Irma and Maria. The island is home to the largest population of families affected by Hermansky-Pudlak Syndrome, a genetic disorder that...
Results from the 2017 HPS Network Conference Survey
The HPS Network would like to thank the conference attendees who completed the post conference survey. We had an 11 percent response rate. Here is a peek at some of the results we will be able to share with conference funders and supporters: 91 percent reported they...
HPS Community “Tunes in” for 24th Annual Conference
Nearly 300 people with HPS, their families and HPS researchers, met in Uniondale, N.Y. in March for the 24th Annual HPS Network Conference at the Long Island Marriott. The theme, Tune in the Network! The weekend was kicked off by a first-ever Mothers’ Workshop, given...
Appell recognized by the governor of Delaware
Donna Appell, President and Founder of the HPS Network, was recognized by a special proclamation by Governor John Carney and Lieutenant Governor Bethany Hall-Long of Delaware for her work on behalf of people affected by Hermansky-Pudlak Syndrome, as well as those with...