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The HPS Network presented to the medical staff at Soundview Health Clinic in the Bronx on Feb. 24th. The clinic serves a heavily Puerto Rican population. Donna Appell explained the ins and outs of Hermansky-Pudlak Syndrome and the services the HPS Network...
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On Feb. 24th Brenda Lopez, Leticia Colonio and Heather Kirkwood spent an hour on the streets of the Bronx handing out chocolates and brochures about Hermansky-Pudlak Syndrome in English and Spanish. The trio focused on a neighborhood near Lincoln Hospital...
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Today was a tough day for me. It was one-part a crappy medical day (literally) and to be honest, I was retreating into the Heather cave. I felt incredibly anxious and blue knowing that today there was an FDA hearing about Pirfenidone and that it could...
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For those who are able to work, this could be a great opportunity. The federal government offers very generous benefits and they are good about adaptive tech etc. Ryan's wife Sara passed this along, and I can think of so many people for whom it would...
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Letty, Ashley and Brenda - three HPS'ers on the move for outreach! The HPS Network held an open meeting for the community Feb. 24 at HOSTOS Community College in the Bronx. Students and professors from the college’s allied health programs were invited...
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Letty, Ashley and Brenda - three HPS'ers on the move for outreach! The HPS Network held an open meeting for the community Feb. 24 at HOSTOS Community College in the Bronx. Students and professors from the college’s allied health programs were invited...
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This coming Tuesday the Food and Drug Administration (FDA) is holding a hearing that is part of the process for their review of whether to approve or deny Pirfenidone as a treatment for idiopathic pulmonary fibrosis. This is the same drug the National...
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Donna Appell and Dr. Samuel Seward presented at Lincoln Hospital Grand Rounds in the Bronx on Feb. 23rd as part of an outreach initiative in New York City. Dr. Seward presented the scientific information about Hermansky-Pudlak Syndrome, while Appell presented...
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Too often lung health takes a back seat. While other disorders and organ systems have special days, special logos, and lots of public health campagins to educate people about risk factors, little is done to educate the public about lung health, besides...
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Below is a story from one of our Chediak-Higashi families. It's from a press release issued by the Florida Blood Services, but mom said it would be okay to put it on the blog as well - and we're hoping to do a newsletter story after the event...
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Just passing this along: SAVE THE DATE Monday, March 22, 2010 The Computer Center for Visually Impaired People (CCVIP) at Baruch College Invites You to a Technology Demonstration on GPS Solutions for Visually Impaired People Time: 7:00-9:00 pm Where:...
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Below is a press release from our friends at the Coalition for Pulmonary Fibrosis. They are partnering with the American Thoracic Society and the Pulmonary Fibrosis Foundation to fund more grants to kick start more research on pulmonary fibrosis. This...
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Here's what our friend Noel was able to dig up - thanks Noel! Here's the actual page to get info on requesting the birth certificate. I can't believe they dont just put a simple link on the main page. Even the guy on the news report Wilson...
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The following Associated Press story was posted to the HPS Adults Yahoo! Group. I would link it back to the AP, but now I can't seem to find the story. This is very important to anyone who may need to travel back and forth to the NIH to participate...
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The American Society of Human Genetics is holding it's 5th annual DNA Day Essay Contest. The due date is March 15th and the first prize is $400. If you're a high schooler or a middle schooler, check it out. Here's the link: http://www.ashg...
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