Tag Archives: Rare Disease Day

Reflections on Rare Disease Day

By Clark Herman | Published: March 1, 2013
The rare disease advocacy community convened yesterday for its annual Rare Disease Day celebration, marking another year of advances in the fight against ailments once almost entirely ignored by big Pharma. The fact that hundreds of rare diseases are finally attracting real attention from major researchers, not to mention big dollars, is attributable not [...]
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Rare Diseases Lead to Unique Legislation

By Jennifer Ringler | Published: February 29, 2012
Since 1983, pharma and patent organizations have been working together to influence policy aimed at improving the lives of those with rare diseases. In 1983—with the help of Abbey Meyers and the drive she had to help her son (more on that here)—the Orphan Drug Act was passed to incentivize pharma to step up and play [...]
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Rare Disease Day: Spotlight on Solidarity

By Jennifer Ringler | Published: February 28, 2012
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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