Tag Archives: NORD

The Orphan Drug Act at 30 Years: What's Next?

30 years ago last week, the US Orphan Drug Act came into being, and with it, a door of possibilities opened up for patients with literally thousands of untreated diseases. The anniversary marks the beginning of a journey where medicines for rare diseases have gained a foothold in the portfolios of drug companies large and […]
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Rare Disease Day: Spotlight on Solidarity

Patients, policymakers and pharmaceutical companies are uniting around rare diseases on the rarest of calendar days, presaging a leap forward in health outcomes and business opportunities. Aligning humanistic objectives with business incentives is often the sine qua non of effective community activism. This year’s Rare Disease Day – hosted in the US by the National […]
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Linguistics: "Salami-slicing" Orphan Drugs

Ultra-orphan? It’s a phrase I never heard before, but increasingly, companies are taking it on and finding it a useful way to describe the very smallest patient groups. “Language is very important, and you have to understand how it affects perception,” says Maria Hardin, vice president of patient services for NORD (National Organization for Rare […]
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