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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.

But on Thursday, February 28, health advocates everywhere will celebrate World Rare Disease Day, an annual recognition of the more than 7,000 rare diseases, including those targeted by FFB, that affect 30 million Americans alone. That’s one in 10 people. In commemoration, we’re asking that you send an email to Congress, letting your representatives know that cuts in research are unacceptable.

Last year, on Leap Day, FFB’s chief research officer, Dr. Steve Rose, did a great job of explaining why research for treatments of rare diseases provides a universal pay-off. The retina, for instance, is neural tissue, “an extension of the brain,” as he wrote, so research targeting the retina holds the potential for benefitting anyone with a brain disorder, such Alzheimer’s, Parkinson’s and multiple-sclerosis.


The reverse is also true. In fact, drugs targeting cancer and epilepsy are now being tested in clinical trials as treatments for retinal diseases.

The theme of this year’s World Rare Disease Day—for which we’re suggesting other actions as well—is “rare disorders without borders.” Affecting tens of millions worldwide, these diseases not only cause pain and suffering; they tax health-care systems and drain economies. Please let our government know that rare diseases should be immune (pardon the pun) to bipartisan politics.

One Response to 'Send a Message on Rare Disease Day'

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