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 to the president on Feb. 27th, 2017. The hiring freeze could significantly impact research on rare diseases as well as the review and approval of new medications. Already the FDA is hampered by a shortage of qualified employees to...

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 needed from those with HPS who did, and did not, have bowel disease. “Even though I don’t have the GI issues of HPS, I chose to participate in the project because I feel it could contribute important information to the researchers so...

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 to have such a good turnout of men looking for a way to get involved and support someone with HPS,” said Anthony Creer, founder of the HPS Brotherhood. The group agreed to set the goal of raising the nearly $20,000 it takes...

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 Services for the Blind, will give an introductory session on various uses for a white cane or orientation and mobility instruction, Saturday afternoon, March 11, at the 24th Annual HPS Network Conference. Sometimes white canes...

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 what has happened thus far, what the plans are for the future and how the HPS community can best support these efforts. Dr. Jesse Roman is a Professor of Medicine, Pharmacology and Toxicology at the University Of Louisville...

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