Tag Archives: Rare Disease Day

Swedish Firm Honored for Rare Disease Treatments

Swedish Orphan Biovitrum AB (Sobi) was last night presented with a EURORDIS Award for its commercial and development portfolio in the field of rare diseases. The award also recognized the company’s track record on access to drugs and its collaboration with patient organizations. EURORDIS is Europe’s largest patient organization in rare diseases. Its CEO, Yann […]
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Europe: Expectations High for Rare Disease Day

Next week Europe will celebrate Rare Disease Day. This is an interesting example – one might almost say a rare example – of a successful attempt by a European interest group to capture public attention. It is now an annual awareness-raising event co-ordinated by the European rare diseases lobby group, EURORDIS. For this year’s celebration, […]
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Reflections on Rare Disease Day

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 only […]
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Rare Diseases Lead to Unique Legislation

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 […]
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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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