NEWSROOM
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...
Bag it for the Cure
Becky Nieves, a mother of a child with HPS and a board member of the HPS Network, is hosting an online fundraiser for the HPS Network with Mixed Bag Designs. Need a beach bag for a summer trip, or a backpack for the fall? Check out these colorful and stylish bags. Buy...
First Mothers’ Workshop held at the HPS Network Conference
The first afternoon-long Mothers’ Workshop was held at the 24th Annual HPS Network Conference at the Long Island Marriott in Uniondale, N.Y. in March. The workshop was hosted by Sheila Adamo, LCSW, CADC, a licensed clinical social worker who has conducted...
Hermansky-Pudlak Syndrome Network to attend American Thoracic Society International Meeting
The Hermansky-Pudlak Syndrome Network (HPS Network) will attend, and exhibit at, the American Thoracic Society’s International Meeting May 19 – 24th in Washington DC. The meeting attracts more than 16,000 respiratory medicine physicians, scientists, clinical...
Hermansky-Pudlak Syndrome Network featured in the New York Post
The Hermansky-Pudlak Syndrome was one of the rare diseases featured in a recent article in the New York Post by Molly Shea. Donna Appell, CEO of the HPS Network, and her daughter Ashley, were featured in the article that ran April 3rd, 2017. To see the article, go to:...
HPS Network launches the Silver for Silver initiative
The Hermansky-Pudlak Syndrome Network (HPS Network) will celebrate its 25th annual conference in 2018 and to help pay the bills, the Network is launching the Silver for Silver initiative. Supporters of the HPS Network are encouraged to save their silver change until...
25th Annual HPS Conference
Details Coming Soon!
HPS researchers gather for Meeting of the Minds
The third annual Meeting of the Minds brought together 38 doctors and researchers working to solve the mysteries of Hermansky-Pudlak Syndrome, March 11th at the Long Island Marriott in Uniondale, NY. The meeting was held in conjunction with the 24th Annual HPS Network...
HPS Network joins other patient groups to ask Trump to lift hiring freeze on NIH and FDA
The HPS Network joined 145 other patient organizations in signing a letter to President Trump asking him to lift a hiring freeze he instituted on the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) on Jan. 23, 2017. The letter was sent...
HPSers participate in bowel research at the HPS Network Conference
People with Hermansky-Pudlak Syndrome (HPS) offered up stool and blood samples for a bowel research study being conducted by Dr. Louis Cohen, Assistant Professor at Mount Sinai Medical Center in New York. Samples were collected from any gene type of HPS and were...
HPS Brotherhood makes plans for 2017-2018
The HPS Brotherhood - a group of men who are supporting or caring for a loved one with HPS – met for the second time at the 24th Annual HPS Network Conference. “We had 18 men there. They were husbands, brothers, boyfriends, sons – it doesn’t matter. It was just great...
So you think you’d never use a cane – Presentation about orientation and mobility
Some people with visual impairments assume they would never benefit from using a white cane, or from orientation and mobility instruction, because they do have a fair amount of functional vision. Mike Desposati, an Orientation and Mobility Instructor from Helen Keller...
Dr. Roman to update the HPS community about HPS clinics in Puerto Rico
Dr. Jesse Roman will speak to the HPS community on Sunday, March 12th at the 24th Annual HPS Network Conference and provide an update about the progress of recently established clinics to serve people with Hermansky-Pudlak Syndrome in Puerto Rico. He will update us on...
Dr. Young to present an update on HPS involvement in the Rare Lung Disease Consortium
Dr. Lisa Young from Vanderbilt University will give a presentation updating the Hermansky-Pudlak Syndrome community about HPS involvement in the Rare Lung Disease Consortium at the 24th Annual HPS Network Conference, to be held March 10 – 12, at the Long Island...