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 University Of Louisville School Of Medicine. He is also Chairman of the Department of Medicine, Chief of the Division of Pulmonary, Critical Care and Sleep Disorders Medicine and a Distinguished University Scholar. Dr. Roman has taken on...

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 raise money for the HPS Network. At this event, they sold t-shirts and had a donation jar available for anyone not wanting to make a purchase, but eager to help fund the cure for HPS.

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 can complete the survey online at: https://www.surveymonkey.com/r/5M8D7PG  

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 treat often life-threatening rare diseases by giving them an extra six months exclusivity for an FDA approved drug or biological product when it is FDA approved for a new indication. It is estimated the legislation could expand...

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 her skills as an attorney to be a great resource for patients with HPS and concerns regarding social security disability. She learned about the HPS Network through a colleague at work, Carmen Camacho. We, as a community, are...