Tag Archives: rare diseases

2012 Orphan Disease Forum: Addressing Today’s Opportunities and Challenges

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If all of the people with rare disease lived in one country, it would be the world’s third most populous country! Through dedicated companies such as the National Organization for Rare Disorders (NORD) and Centric Health Resources, the pressing issue of orphan diseases and its patients are being addressed. A rare disease is defined by any disease affecting fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting over 350 million people worldwide.  Furthermore, Read More >

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International Rare Disease Day: Join the Movement

Nicole Boice

By Nicole Boice, President and Founder, RARE Project Being diagnosed with any illness can be overwhelming. Imagine what it’s like, though, to be diagnosed with a disease that you’ve never heard of – maybe even one that your doctor has never seen before. Millions of people start this diagnostic odyssey on their own, with little or no support, no real direction, with feelings of isolation and fear. That’s exactly the situation in which millions of Read More >

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Stopping ALS: An interview with Dr. Perrin from ALS TDI

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What is ALS? How widespread is the disease? Are there any treatments for ALS? Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease and outside the US as Motor Neuron Disease (MND) or Charcot’s Disease, is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function. Dr. Steven Perrin is the CEO, CSO and Vice Chairman of the ALS Therapy Read More >

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When RARE is not so RARE!

Nicole Boice

By Nicole Boice, Founder/President, RARE Project Did you know that there is a community of sick and disabled women, children, and men that is so large that it outnumbers all of those with cancer and AIDS combined worldwide?  Scary to think about? Can you guess what it is? Staggering Statistics The Rare Disease Community is made up of over 7,000 known rare diseases and over 350 million people worldwide.  Here in the US, over 35 Read More >

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Casting Call for “Rare Disease Chasers” – A New Reality TV Series

Are you a medical expert who works on finding, diagnosing and treating people with rare diseases? Are you interested in starring on a reality TV series? The executive management of the Global Healthy Living Foundation launched a nation-wide search for physicians, researchers and other medical experts who may be interested in starring in a show called “Rare Disease Chasers” on The Learning Channel (TLC) network. The series will follow a team of medical experts each Read More >

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