NEWSROOM

    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.”...

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,...

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...

  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...

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...

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...

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...

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...

The HPS Network is one of several sponsors of The Gordon Research Conference on Lung Development, Injury and Repair, held at Colby-Sawyer College in New London, NH Aug. 20 – 25th. Susan Guttentag, who works on HPS Research, is a Vice Chair of the event. Presentations...

  The ninth annual Rare Artist competition, held by the EveryLife Foundation, is open and ready for submissions. The contest celebrates the talents of the rare disease community and is open to patients with rare diseases, family members, caregivers and medical...

  Becky Nieves, a member of the HPS Network Board of Directors and the mom of a daughter with HPS, recently held an online fundraiser for the Network using www.mixedbagdesigns.com. “This fundraiser was super easy, and it can be done totally online,” says Nieves....

  Work continues on the part of 237 patient advocacy organizations to try to pass the OPEN Act (Orphan Product Extensions Now, Accelerating Cures and Treatments; HR 1223 / S 1509). The HPS Network is one of the patient organizations supporting this bill. The OPEN...

The second annual A Run Through History will be held Sunday, Oct. 22nd at 8:30 am at Theodore Roosevelt Memorial Park in Oyster Bay, NY. The event will benefit the HPS Network and PeerPals.org. To participate in the race, there is a $25 entrance fee, plus a $2.50...

Joanne Criblez’s summer camp voice students are giving a concert to raise money and awareness for Hermansky-Pudlak Syndrome (HPS) Thursday, Aug. 10th at the LIU-Post Hillwood Commons Theatre, 720 Northern Blvd., Brookville, NY. The performance is “A Night At The...

In July, the HPS Network received a check for $86.56 from www.igive.com – an online shopping mall that allows merchants to donate a percentage of your purchase price to the cause of your choice. Granted, this is not a ton of money, but it will pay for six new patient...

Oyster Bay, NY – A study location for an observational study of Hermansky-Pudlak Syndrome has opened at Loyola University in the Chicago area. Hermansky-Pudlak Syndrome, or HPS, is a type of albinism that involves other health-related issues beyond low vision and...

Donna Appell, Executive Director and Founder of the HPS Network, has been nominated for the Eagle Rare Life Award, a contest held by the Eagle Rare Bourbon company. To win, however, she needs your vote every day until Dec. 5th. If Donna wins, the prize is $50,000....

The Boxcar Bar and Arcade in Greensboro, N.C. held an Fundraiser Night on June 28 to benefit the HPS Network. They donated 15 percent of sales to the HPS Network from the night. Karen and Tommy Tillman worked with Boxcar on the event and offered information about the...

Heather Kirkwood, VP and Director of Communications for the HPS Network, represented the HPS patient community at the first NCATS Day at the National Institutes of Health (NIH).  NCATS, or the National Center for Advancing Translational Science, is one of 27...

The documentary RARE, which followed the HPS Network through the process of a clinical trial during a three-year period, is available for DVD purchase. Be sure to use this link that takes you to the home video section of the distributor’s website. It is sold elsewhere...

Dr. Jesse Roman was awarded the Doctor of the Year Award at the 24th Annual Hermansky-Pudlak Syndrome Network Conference, held March 10 – 12 at the Long Island Marriott in Uniondale, N.Y. Dr. Roman is a Professor of Medicine, Pharmacology and Toxicology at the...

Amber Klein, and her dad Jeff, once again sold Dare to be Rare merchandise at the Power Pro Wrestling event, held at the Ellendale Fire Company in Ellendale, Del. on June 17th. Amber and her dad have worked in partnership with Power Pro Wrestling for many years to...

  If you attended the HPS Network 2017 Conference, but you did not turn in your conference survey, please fill out the survey online now. We need your input to plan next year’s event. It is also helpful when searching for funding to help support the event. You...

The HPS Network is one of more than 220 patient organizations urging Congress to pass the Orphan Products Extension Now Accelerating Cures and Treatments Act (OPEN Act). This legislation would offer incentives to pharmaceutical companies to repurpose existing drugs to...

Liliana Mangiafico, a long-time supporter of the HPS Network and those affected by Hermansky-Pudlak Syndrome, ran the Boston Run to Remember May 28th to raise funds and awareness for HPS. Mangiafico has run the same race several years for the HPS Network and has used...