CAPS community

CAPS or Cryopyrin Associated Periodic Syndromes are a group of auto-inflammatory rare diseases (MWS, FCAS & NOMID). Below, you'll find testimonies of patients who live with them.

Recently diagnosed with MWS by malinda published 2 months ago

My Story Hello everyone,

It’s funny but whenever asked about my health, I’d always just gloss over it, since no matter how I’d explain, people just couldn’t understand. But after reading all your stories, I finally found a place where people do understand and where I’m no longer the only one.

As far back as I can think there’s always been something wrong with my health. Most of my childhood was spent in and out of the hospital, so much so that I had to repeat the 2nd grade. I’ve been poked, prodded, biopsied… You name it they did it. A...

Recently Diagnosed with a form of CAPS by JacquiAdkins published 4 months ago

I am 27 from South Amherst, Ohio. I have recently been diagnosed with a form of CAPS although I need to go through more testing to determine which form. My mother and a few members of her family have had symptoms for years but doctors could never find anything. I am 27 from South Amherst, Ohio. I have recently been diagnosed with a form of CAPS although I need to go through more testing to d...

NOMID Alliance by Karen Durrant published 7 months ago




Greetings to All,

We are very pleased to be involved in the CAPS community on the rarediseasecommunities.org site that is sponsored by EURODIS and NORD. These organizations are de...

Fifth anniversary AMWS CINCA Patient Group France by AMWS CINCA published 7 months ago


They came from the great West and even the southeast of France to welcome Karen Durrant, her husband and their three boys, Nathan, Ethan, Seth and Lucas, arrived from San Francisco (California, East Coast of the United States almost Pacific Ocean), for a friendly meeting to mark the fifth anniversary of the AMWS-CINCA.
Karen, President of the Nomidalliance association (www.nomidalliance.n...

Patient groups

  • NOMID Alliance

  • AMWS/CINCA

  • Canadian CAPS Network

  • AIFP

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