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Posts tagged rare diseases

For Rare Disease Day – The Many Benefits of Genetic Research

Rare Disease Day logoIt’s apropos that Rare Disease Day 2016 will be held on the rarest day on the calendar—Leap Day, February 29.

However, collectively, rare diseases are not uncommon. About 30 million Americans, nearly 10 percent of our population, are affected by one of 7,000 rare diseases. They’re an important public health issue, making it incumbent upon us to work hard to eradicate them.
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Send a Message on Rare Disease Day

Rare Disease Day LogoThe timing couldn’t be better. This Friday, March 1, the U.S. Congress, by not voting on ways to decrease the federal deficit, will allow automatic, across-the-board budget cuts to go into effect instead. Known as “sequestration,” Congress’ inaction will harm retinal research spending, in particular, by gutting the National Eye Institute of the equivalent of 90 grants aimed at restoring or saving vision.
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Orphan Drugs Get Special Treatment

Image of lab equipmentYou wouldn’t think that being called an “orphan” is a good thing. But for developers of treatments for rare diseases — including inherited retinal conditions — “orphan” status provides valuable benefits, such as tax incentives, access to special research grants and assistance with clinical trial design. The orphan designation also gives seven years of market exclusivity to the developer of a treatment.

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Drawing Parallels Between Retinal and Non-Retinal Diseases

Test tube bottles

Back in February, in a post noting Rare Disease Day, I mentioned how the Foundation’s research has applications that go beyond our purview, mainly because the retina is, in fact, neural tissue, or an extension of the brain. So some treatments we fund may someday help people with conditions unrelated to the eye.
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