Want to support the FCS Foundation? Donate today!
Listen to Lindsey and Melissa discuss their reaction to the FDA's decision regarding Waylivra from "Rare in Common"
When a rare disease treatment fails, what happens next?


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.


Learn About FCS

Find out more about FCS and the affects it has on patients!

Read More >
Join Mailing List

Sign up to be a part of our mailing list, and receive up to date information about FCS.

Join Here
FCS Patient Stories

Learn about patients and their journeys and share your experience with others.

Read More >