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...
