Today is World Rare Disease Day – an event launched in 2008 to galvanize public awareness and research momentum for rare diseases. In the United States, a disease is considered rare if it affects fewer than 200,000 people. Yet there are more than 7,000 known rare diseases. This ratio means that there’s little funding for rare-disease research, so even getting a diagnosis can be a years-long odyssey, never mind treatment. Rare disease patients — the majority of them children — too often fall through the cracks.
“World Rare Disease Day unites all the thousands of rare diseases to speak with one voice and raise attention to this often overlooked sector of health research,” says Jimmy Lin, a TED Fellow and the founder of the Rare Genomics Institute, which serves the needs of patients suffering from rare diseases.
To mark World Rare Disease Day, the RGI has released a free…
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