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March is National Colon Cancer Awareness Month

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In 2000, President Clinton officially dedicated March as National Colon Cancer Awareness Month. Since then, it’s grown to be a rallying point for the colon cancer community, as thousands of patients, survivors, caregivers and advocates join together to spread awareness and raise funds for the cause. The nation’s oldest and largest nonprofit dedicated to the disease, the Colon Cancer Alliance, is encouraging everyone to support National Colon Cancer Awareness Month so the disease can be Read More >

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Comparative Effectiveness Research Webinar

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On Monday, March 14, the  (NPC) will host a webinar on the relationship between comparative effectiveness research (CER) and the environment for health care decision-making.  This is a noteworthy event that will feature Dr. Joe Selby, the executive director of the Patient-Centered Outcomes Research Institute, and other experts. Why is this webinar so significant? As every biopharmaceutical company knows, we’re on the verge of a new, golden era in medical innovation.  The pipeline is filled Read More >

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2016 Rare Disease Day at NIH: “Patients and Researchers – Partners for Life”

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Rare Disease Day was established in 2008 in order to raise public awareness globally for rare and orphan diseases and shed light on the challenges that those who are affected by rare diseases face.  This year, Rare Disease Day appropriately fell on the rarest day of all – February 29. To help with this global effort, the National Institutes of Health’s (NIH) National Center for Advancing Translational Sciences (NCATS) and NIH Clinical Center annually hosts Read More >

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A Patient’s Rare Cancer Mission

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Like most people, Paul Poth had never heard the word cholangiocarcinoma. As a healthy 38 year-old new father with no predisposing factors and no family history, it was a complete shock to be diagnosed with this rare cancer. Paul was confident, however, that by being in Boston at a top cancer center, working with leading doctors who were at the forefront of both treatment and research, something could be done to help him. But the Read More >

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The Rare Disease Foundation as an Accelerator of Research

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The Hereditary Neuropathy Foundation (HNF) was founded in 2001 by Allison Moore after she was diagnosed with Charcot-Marie-Tooth (CMT) disease. Many rare disease patients and parents either join or start a foundation while many others suffer in silence. Allison resolved to do the former, and set out to get the research on the disease moving. This led her to develop the Therapeutic Research in Accelerated Discovery (TRIAD) as a collaborative model with academia, government, and Read More >

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