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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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ICYMI: Rep. Hatch Slams Possible Obama Move on Drug Prices

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In a hearing held on Thursday to review the Department of Health and Human Services 2017 budget, Senate Finance Committee Chairman Orrin Hatch (R-UT) pressed HHS Secretary Sylvia Burwell on whether or not the Obama Administration is planning to issue an executive order that would allow the government to negotiate drug prices. Read more in the Washington Examiner. Video of Thursday’s hearing can be found on the Senate Finance Committee website.

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#BIOCEO16 Fireside Chat with Senator Chuck Schumer

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New York Senator Chuck Schumer joined attendees at the 2016 BIO CEO & Investor Conference this afternoon for a fireside chat, moderated by BIO Chairman Ron Cohen, to discuss current political and public policy issues facing the country and the biopharmaceutical industry. The Senator expressed optimism that progress can be made on a bipartisan basis in a number of areas that will be conducive to investment in medical innovation and the well-paying jobs that such Read More >

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