Tag Archives: orphan drugs

Rare Disease Day 2014: Joining Together for Better Care

Hans Schikan of Prosensa

There are more than 6,000 different rare diseases affecting over 60 million people across Europe and North America, alone, and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone. As the world marks Rare Disease Day on February Read More >

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How the Orphan Drug Tax Credit Leverages MDA’s Fight against Rare Genetic Diseases

dna_peoplefigures

In the early 1950s, a small group of concerned parents, people with muscular dystrophy and their friends started a volunteer organization, the Muscular Dystrophy Association (MDA), to raise money for research into the causes of rare genetic diseases that mysteriously destroyed muscles and shortened lives. In the decades since — thanks to the support of a caring public and vital corporate partnerships — MDA has become a leading voluntary health agency, funding research in academic Read More >

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NORD Urges Congress: Don’t Cut Orphan Drug Tax Credit

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This week, the National Organization of Rare Disorders (NORD) and more than 70 patient organizations sent a letter to key members of Congress in support of maintaining the Orphan Drug Tax Credit. Representing millions of American men, women and children suffering from rare diseases, the organizations voice strong support for the Orphan Drug Tax Credit (ODTC) and urge Congress to keep this critical tax credit in place as tax reform proposals are developed. According to Read More >

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The Ethics of the Market Access Debate

Rogerio Vivaldi

At the core of the market access conversation lies the question of value. How much do we value two years added to the end of an 80-year-old’s life? How do we put a dollar amount on a medicine that prevents a rare disease patient, who may only live to age 20 regardless of receiving treatment, from losing her ability to walk? How can we define metrics to measure the cost of a child with a Read More >

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Worldwide Orphan Drug Market to Grow to $127 Billion by 2018

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The 2013 Orphan Drug Report from Evaluate, which launched today at the 2013 BIO international Convention, sheds light on the market dynamics of orphan drugs — pharmaceutical products aimed at rare diseases or disorders — projecting that sales will experience a compound annual growth rate of 7.4 percent between 2012 and 2018, nearly double that of the prescription drug market, excluding generics.  The report based on EvaluatePharma® data found that the worldwide orphan drug market Read More >

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