Rare Disease Report

Rare Diseases By The Numbers – October 21st

OCTOBER 21, 2016
RDR Staff


Number of rare disease New Orleans Saints superfan signed to travel with the team to their next game as their hype-man.


Number of siblings that were conjoined and the number of days the separation operation took.


Number of tries Teva Pharmaceutical Industries submitted their orphan drug treatment of chorea associated with Huntington disease to the FDA.


Number of junior ROTC boys carrying the American Flag when the spina Bifida Patient stood to honor it.


The amount of Rare Disease Heroes Awards that were given in Arlington, Virginia on Monday.


The age of Ellie McGinn who started a campaign to get her long tongue twister rare disease’s name changed.


Number of yards running back Tevin Coleman had in Denver despite his previous concerns of carrying the sickle cell trait.


Number of people who saw the behind the scenes picture of the filming of FDA’s Janet Woodcock interview.


Number of people who liked Jim’s Zebra tie for the Rare Disease Heroes Recognition Dinner.


Number of views for Living With Von Hippel-Lindau disease video received.

23 million

The amount of money research institutes studying rare diseases just received from the FDA.

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