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Monday, February 17, 2014

Minnesota Governor, Mark Dayton, Proclaims Rare Disease Day!

Thank you Governor Dayton for proclaiming February 28, 2014 Rare Disease Day in our beautiful State of Minnesota!

"The Office of Governor Mark Dayton will issue proclamations for extraordinary state or local events that deserve special recognition from the Governor. Proclamations will be issued for events or activities that affect a broad group of people. "

Kari Ulrich Rare Disease Advocate Minnesota
Fibromuscular Dysplasia/Ehlers Danlos Patient

Rare Disease Facts:

  • 1 in 10 people have a rare disease
  • Rare diseases impact more people than aids and cancer combined
  • 80 percent of rare disease are caused by faulty genes
  • There are approximately 7,000 different types of rare diseases 
  • In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group.
  • Approximately 50% of the people affected by rare diseases are children
  • Rare diseases are responsible for 35% of deaths in the first year of life
  • According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

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