NEWSROOM
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...
HPS Network a sponsor of The Gordon Research Conference on Lung Development, Injury and Repair
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...
Show off your RARE talents
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...
Family sells Bags for the Cure
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 passage of the OPEN Act
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...
A Run Through History 5K to be held in Oyster Bay, NY
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...
Campers will sing to raise money for HPS
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...
Shop for the cure at iGive
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...
Center opens for HPS study in Chicago
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 nominated for Eagle Rare Life Award
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....
Boxcar Bar and Arcade holds HPS Network fundraiser
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...
HPS Network attends NCATS Day at NIH
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...
Rare documentary available for purchase on DVD
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. Roman awarded Doctor of the Year by HPS Network
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...
Power Pro Wrestling and Klein Supporters Dare to be Rare
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...
Action Alert: Respond to the post conference survey
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...
HPS Network supports OPEN Act legislation
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...
Mangiafico runs Boston Run to Remember for Hermansky-Pudlak Syndrome
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...
HPS Network attends Mount Sinai / CHOP ribbon cutting
Donna Appell, President and CEO of the HPS Network, and Ashley Appell, an adult with HPS, were on hand for the new joint Fetal Medicine Program created between the Children’s Hospital of Philadelphia (CHOP) and Mount Sinai hospitals. The hospitals also have an...
HPS Network presents Grand Rounds at Metropolitan Hospital
Donna Appell, President and CEO of the HPS Network, and Ashley Appell, an adult with HPS, presented Grand Rounds to pediatric and genetics staff at New York’s Metropolitan Hospital on Friday, June 2, 2017. Donna Appell explained the basics of Hermansky-Pudlak Syndrome...
Single lung transplant reported in Spain at American Thoracic Society
Doctors from Spain attended the International American Thoracic Society meeting, held in Washington DC, May 19 – 24th and presented an abstract case report of a single lung transplant in a 49-year-old male with Hermansky-Pudlak Syndrome. The transplant was conducted a...
Single lung transplant reported in Spain at American Thoracic Society
Doctors from Spain attended the International American Thoracic Society meeting, held in Washington DC, May 19 – 24th and presented an abstract case report of a single lung transplant in a 49-year-old male with Hermansky-Pudlak Syndrome. The transplant was conducted a...
Join the HPS Network for patient day at the American Thoracic Society
A group from the HPS Network will be attending Meet the Experts, a patient program held at the American Thoracic Society by the Public Advisory Roundtable. This year’s theme will be “The Role of Patients in Advancing Treatments and Cures.” The seminar will be held...