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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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Rare Disease Profile: Batten Disease

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In 2007, we were living an ordinary life outside of Chicago.  We had three children: Noah and fraternal twin girls, Laine & Emily.  Life was good, then things began to change. Noah began life as a normal child.  He talked, giggled, loved watching trains, wrestling with Daddy, and getting into a little mischief.  When Noah was about three years old, he began having tremors and forgetting words and phrases he once mastered.  Months later, he Read More >

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Climbing the Same Mountain: How Rare Disease Day Has Changed Our World

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Rare Disease Day has a short history in the arena of national awareness events. It’s only been celebrated since 2008 in Europe and 2009 in the United States and if you check most web calendars of national awareness months/weeks/days, unfortunately you will not find Rare Disease Day listed. Is it correct to say that Rare Disease Day has changed our world? How is that possible in just eight short years? What is it about Rare Read More >

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Reality Check for AARP

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This morning, AARP released yet another misleading report on prescription drug prices that ignores key facts about the marketplace for medicines. The report suffers from several notable flaws. Most glaringly, AARP underplays the value of the Medicare Part D program and ignores the stability in the program brought about by market competition: Average annual out of pocket spending on drugs for Medicare Part D beneficiaries has fallen in recent years, declining 16 percent between 2007 Read More >

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One Vision for Rare Diseases

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Diagnosis Day a.k.a Ground Zero My son, Jonah, was diagnosed with Sanfilippo Syndrome type C in May of 2010.  He was 22 months old, the youngest child to have ever been diagnosed asymptomatic without having an older sibling diagnosed first.  A change of pediatricians at his first year well-visit brought us to a new pediatrician who commented that Jonah’s head circumference was off the charts even though he had met all of his developmental milestones. Read More >

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