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BioCentury 07.20.14 - [1] Galvanized Mom
BioCentury 07.20.14 - [1] Galvanized Mom
Parent Project Muscular Dystrophy Founder Pat Furlong recounts her extraordinary efforts upon learning her two boys had been diagnosed with fatal DMD; her work gave the Duchenne community research support and a voice.
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BioCentury 07.20.14 - [2] Taking the Lead
BioCentury 07.20.14 - [2] Taking the Lead
In a Parent Project MD pilot study, parents identified stabilizing the disease as their priority. This perspective will help the FDA evaluate the risk-benefit profile of new DMD drugs.
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BioCentury 07.20.14 - [3] From Shock to Success
BioCentury 07.20.14 - [3] From Shock to Success
Chordoma Foundation Co-founder and Executive Director Josh Sommer was a teenager when he was diagnosed; immediately joining the only NIH-funded Chordoma lab in the US, Josh set about transforming rare-cancer research.
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BioCentury 07.20.14 - [4] Advice for Patient Advocates
BioCentury 07.20.14 - [4] Advice for Patient Advocates
Academics and pharmaceutical companies do not always drive the research agenda for rare diseases; patient groups and individuals have the power to create new legislation, obtain funding and influence drug development.
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