Tag Archives: Orphan Drug Tax Credit

Complexities of Rare Diseases Take the Spotlight at BIO

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Global Genes Founder & CEO Nicole Boice opened the BIO 2015 Orphan & Rare Disease Track by addressing a packed session with a simple, powerful statement: “We’re all working to eliminate the challenges of rare diseases, but patients and their advocates aren’t always equipped to fight.” Organizations like Global Genes help families affected by rare disease by connecting them with much needed tools and resources. By better understanding the definition of a “rare” disease, industry Read More >

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Mito What???

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Mitochondrial Disease: The Most Common Disease You’ve Probably Never Heard of… About 20 years ago, mitochondrial disease was virtually unheard of.  Just 10 years ago, it was considered rare. Today, according to NORD, a disease is considered rare when less than 200,000 people are affected.  Mitochondrial disease is not a single disease, but rather an entire umbrella of rare diseases.  For example, Alpers disease and Barth syndrome are very different and rare forms of mitochondrial Read More >

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

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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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