Thursday, February 09, 2017

There are 7,000 diseases on the rare disease list

 February 28 is Rare Disease day. Choose one of 7,000 and become informed or support the research. Last year the FDA allotted $23 million over 4 years, choosing 21 projects. As you can see, $23 million doesn't go far. We are supporting MPS III A (San Filippo Syndrome) because we know a sweet girl who has this. While the internet rages with politics and fake news, there are families quietly suffering and battling along. Let's help.
"The U.S. Food and Drug Administration today [Oct. 17, 2016] announced that it has awarded 21 new clinical trial research grants totaling more than $23 million over the next four years to boost the development of products for patients with rare diseases. These new grants were awarded to principal investigators from academia and industry with research spanning domestic and international clinical sites."

Rare disease day in the U.S. is February 28, 2017.

"Rare diseases are not so rare:  there are 7,000 rare diseases disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children.

People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES."

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