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.


A retired French patient tells of her experience of living with Muckle Wells Syndrome through childhood, adolescence, adult-life and retirement. 

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Journey of a Muckle Wells activist by Paul


French patient and president of the Muckle-Wells & NOMID(CINCA) patient association (AMWS) tells of his journey as a patient and rare disease activist in living with Muckle-Wells syndrome. 

From first diagnosis through meeting other patients via the internet, his long struggle with the Social Security for reimbursement of an off-label treatment, his contact with Centers of Reference for Muckle Wells and finally his efforts to create a patient group to help reach out to other patients.

Muckle-Wells Syndrome by National Organization for Rare Disorders (NORD)


Muckle-Wells syndrome (MWS) is one of the cryopyrin associated periodic syndromes (CAPS) caused by mutations in the CIAS1/NLRP3 gene. These syndromes are characterized by fever, rash and joint pain.

Individuals with MWS often have episodic fever, chills, and painful joints. Sometimes these symptoms are exacerbated by cold similar to the related condition FCAS, but can also be triggered by other stimuli. In most cases, Muckle-Wells syndrome (MWS) patients develop progressive hearing loss. In some MWS cases amyloidosis develops later in...

Familial Cold Autoinflammatory Syndrome by National Organization for Rare Disorders (NORD)


Familial cold autoinflammatory syndrome (FCAS), also known as familial cold urticaria, is a rare, inherited inflammatory disorder characterized by intermittent episodes of rash, fever, joint pain and other signs/symptoms of systemic inflammation triggered by exposure to cold. Onset of FCAS occurs during infancy and early childhood and persists throughout the patient's life.

FCAS is one of the cryopyrin associated periodic syndromes (CAPS) caused by mutations in the CIAS1/NLRP3 gene. These syndromes are characterized by fever, ras...

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