Tag Archives: health

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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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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Family Caregiving is Global, Not Local

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We often think of family caregiving as a local issue. As policymakers in the U.S. continue to put pressure on the healthcare and long-term care systems to cut costs, many believe that caring for an aging or disabled loved one is a personal issue. We ask the family caregiver to take on assistance with daily activities, medical and nursing tasks, financial management, and care coordination. Supports, where available, are typically provided through individual health plans, Read More >

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Mesothelioma: Once Hopeless Cancer, on the Verge of Promising Advances

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Mesothelioma, the word, (pronounced mez-uh-thee-lee-oh-muh) is often much better known than the illness it represents. The legal issues surrounding this cancer make mesothelioma, the most expensive keyword on Google (while most keywords cost pennies, the keyword mesothelioma can cost over $300 per click). Mesothelioma, the illness, is a cancer that most often affects the lining of the lung or abdomen; it has no cure and treatment options for patients are few. Prognosis is generally considered Read More >

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Roll Call: Patient-Centeredness, Comparative Effectiveness, and Value

In Roll Call, Tony Coelho former House Majority Whip, Chairman of the Partnership to Improve Patient Care (PIPC) and author of the Americans with Disabilities Act (ADA) discussed the need for a patient-centered approach to healthcare. Coelho says: “Policymakers talk about the “value” of treatments as if there is one value algorithm that applies to all patients equally. While that may be true in academia, in the real world value is personal. Research on treatment Read More >

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