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FCS Foundation News

 

FDA Action on FCS Drug Sparks Patient Group "Outrage"

 

The FCS Foundation has put out a statement regarding the FDA's CRL, rejecting WAYLIVRA (Volanesorsen)

Statement from FCS Foundation regarding rejection of WAYLIVRA

 

Read the Summary Report resulting from an externally-conducted Patient-Focused Drug Development survey, a parallel effort to the U.S. Food and Drug Administration’s Patient-Focused Drug Development Initiative. 

FCS Community

Rare Is Everywhere!

  • FCS is one of 7,000+ rare diseases in the U.S. identified by the National Institutes of Health.
  • Rare diseases affect 1 in 10 people in the U.S., that's 30 million people
  • 95% of rare diseases have no FDA approved treatment
  • About 50% of rare diseases do not have a disease-specific organization researching or supporting the condition.

 

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