Patient Stories - Blog

Dear FCS,

“We sure have been through a lot together, and after 25 years, I am still trying to figure you out. You make my life so hard almost every single day. I cannot go an hour without stressing that, because of you, I am going to get pancreatitis. I worry every single day about the symptoms you may bring, and also how we are going to work together in the future. I want to have children and not have to spend my entire pregnancy in the hospital, and I definitely do not want my children to endure what I have had to...READ MORE.

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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FCS Patient Stories

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