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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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Orphan Drug Tax Credit is Crucial to Rare Disease R&D

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The term “rare disease” may be misleading: to be “rare” a disease must effect fewer than 200,000 people in the U.S., but there are over 7,000 rare diseases that have been identified. Taken together, that means that nearly 30 million Americans suffer from a rare disease or condition.  While innovative therapies have been developed for a variety of these diseases—including Sickle Cell Anemia, Gaucher Disease, and Huntington Disease—too many patients still lack treatment options. Developing Read More >

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Sara Radcliffe: Legislature Shouldn’t Put Hurdles in Way of Cancer Treatments

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Check out California Life Sciences Association (CLSA) president and chief executive officer Sara Radcliffe’s op-ed that ran in The Sacramento Bee this week. She precisely lays out the concerns and challenges associated with delivering cutting-edge medical therapies to patients.

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