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Living with a Rare Disease

Rare Disease Day 2015

Today, February 28th, is Rare Disease Day!

An estimated 350 million people worldwide or about 1 in 10 people in the US are living with a rare disease. 308 more words

Raise Awareness

Reporting live from RDD 2015

A little past due, but happy official Rare Disease Day!

Fun (AKA slightly depressing) facts:

-30 million Americans have a rare disease.

-Two-thirds of them are children. 356 more words

FDA February 2015 Products Receiving Orphan Designation

The chart below identifies FDA February 2015 Products Receiving Orphan Designation as of 03/01/15 in ascending “Orphan Drug Designation Date” order.

FDA February 2015 Products Receiving Orphan Designation… 374 more words

Orphan Drug Development

Rare Disease Day

CHARLES CITY, Iowa- The last day in February has come to be known in recent years as National Rare Disease Day. A day where people will uncommon diseases discuss the difficulties of living with conditions many people have never heard of. 222 more words


Rare Disease Day 2015

If you would have told me July 28, 2011 (the day after the first craniotomy) that on this day I would be working out with over 40 people and coordinated a week-long… 118 more words

Rare Disease

In Celebration Of Rare Disease Day: The Amish And Mennonites

In Strasburg, in the heart of Pennsylvania’s Amish country, is the Clinic for Special Children (CSC), a gene research clinic specializing in genetic problems of the “Plain People”, such as the Amish and the Old Order Mennonites. 274 more words

Rare Diseases

“The Fault Dear Brutus Is Not In Our Stars But In Our Genome”

With modern advances in medicine we have reached a stage where we have been able to sequence the human genome and understand and interpret information about our genes. 2,386 more words

Rare Disease