CAPS community

Here's a selection of information from patients & professionals to better understand CAPS.

NOMID resources

Disease: All NOMID FCAS Muckle Wells

CAPS Frequently Asked Questions (NOMID)

Here are some of the most frequently asked questions and their answers:

What is NOMID?

Neonatal-onset multisystem inflammatory disease (NOMID), also known as chronic infantile neurologic cutaneous articular (CINCA) syndrome, is a rare, congenital, systemic, inflammatory condition distinguished by fever, rash, joint disease, and central nervous system (CNS) disease. The hallmark of NOMID is onset during infancy or early childhood.

NOMID is the most severe form 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.

CAPS Associations

These are patient organisations that have experience and expertise in CAPS diseases. They are supporters of this website. Contat them for more information on their activities.

  • NOMID Alliance

    The NOMID Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with CAPS (Cryopyrin-Associated Periodic Syndromes) and other autoinflammatory syndromes.

    Contact NOMID Alliance
  • AMWS/CINCA

    French patient association provideing information and support to patients and carers living with Muckle-Wells Syndrome and CINCA/NOMID.

    Contact AMWS/CINCA

CAPS Documents

Resources, documents and detailed informations on CAPS. In this section you can download brochures, ask for printed documents or find useful links.

  • Patient leaflet

    Official leaflet of the AMWS CINCA FCAS patient association

    Author/Foundation: AMWS CINCA FCAS

    Year of publication: 2010

    Lang: French

  • French Regulatory Authority information on Canakinumab (Ilaris)

    A report by the French Government regulator on Canakinumab (Ilaris).

    Author/Foundation: Haute Autorité de Santé

    Year of publication: 2010

    Lang: French

  • CAPS Patient Brochure

    Information on CAPS from the NOMID Alliance

    Author/Foundation: Karen Durrant, Dr. Raphaela Goldbach-Mansky, Dr. Hal Hoffman, Dr. Kieron Leslie, Dr. Ben Rubin

    Year of publication: 2008

    Lang: English

  • Cryopyrinopathies: update on pathogenesis and treatment

    Article from the scientific review Nature in 2008 by 3 distinguished French specialists on clinical practises relating to CAPS

    Author/Foundation: Bénédicte Neven, Anne-Marie Prieur and Pierre Quartier

    Year of publication: 2008

    Lang: English

  • Neonatal-onset Multisystem Inflammatory Disease

    Full-text content from NORD encyclopedia of Rare disease explaining different aspects of NOMID

    Author/Foundation: NORD

    Year of publication: 2007

    Lang: English

CAPS community news

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    Improvement of Sensoneurinal Hearing Loss in a Patient with Muckle-Wells Syndrome Treated with Anakinra.
    News, published 2 months ago

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    Muckle Wells syndrome is an autoinflammatory disease in the group of cryopyrin associated periodic syndromes (CAPS). We report the case of an 8 year old girl with MWS who presented with remitting fever, urticaria, remitting coxitis, osteitis, bilateral uveitis anterior, elevated levels of C-reactive protein (CRP) and Serum amyloid A (SAA) and progressive sensoneurinal hearing loss. After starting treatment with anakinra, clinical symptoms dissolved almost completely for about two years now. 

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    Rilonacept for Treatment of Cryopyrin-Associated Periodic Syndromes (CAPS)
    News, published 5 months ago

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    RESULTS AVAILABLE - Status: Completed, Condition Summary: Familial Cold Autoinflammatory Syndrome (FCAS); Familial Cold Urticaria; Muckle-Wells Syndrome (MWS); Genetic Diseases, Inborn

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    Brain multiple sclerosis-like lesions in a patient with Muckle-Wells syndrome
    News, published 5 months ago

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    ARTICLE from Rheumotology (via MEDWORM). Muckle-Wells syndrome (MWS) is an autosomal dominant condition with variable penetrance characterized by recurrent fever syndromes, urticarial rash, non-exudative conjunctivitis, myalgia, arthralgia and/or arthritis, chronic headaches and/or increased intracranial pressure, chronic deafness and decreased level of energy [1]. MWS belongs to the group of cryopyrin-associated periodic fever (CAPS) including familial cold

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    Novartis biological drug Ilaris® approved in EU to treat children and adults with CAPS
    News, published 6 months ago

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    The accelerated EU decision follows approvals in the US and Switzerland, where Ilaris was granted priority review in view of the significant unmet medical need. Ilaris is the only medicine approved in the EU for CAPS patients as young as four years old

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    Regeneron's Rilonacept Granted European Marketing Authorization for Treatment of Cryopyrin-Associated Periodic Syndromes (CAPS)
    News, published 6 months ago

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    Regeneron Pharmaceuticals, Inc. (Nasdaq: REGN) today announced it has received marketing authorization in the European Union for rilonacept, an interleukin-1 blocker, for the treatment of Cryopyrin-Associated Periodic Syndromes (CAPS) with severe symptoms, including Familial Cold Auto-inflammatory Syndrome (FCAS) and Muckle-Wells Syndrome (MWS), in adults and children aged 12 years and older

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    Genetics Home Reference: Muckle-Wells syndrome
    News, published about 1 year ago

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    (via MEDWORM) Muckle Wells on Genetics Home Reference

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    Efficacy and safety of rilonacept (interleukin-1 trap) in patients with cryopyrin-associated periodic syndromes: Results from two sequential placebo-controlled studies
    News, published about 1 year ago

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    To assess the efficacy and safety of rilonacept (Interleukin-1 [IL-1] Trap), a long-acting and potent inhibitor of IL-1, in patients with cryopyrin-associated periodic syndromes (CAPS), including familial cold autoinflammatory syndrome (FCAS) and Muckle-Wells syndrome (MWS).

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    New CIAS1 mutation and anakinra efficacy in overlapping of Muckle Wells
    News, published over 2 years ago

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    Muckle-Wells syndrome (MWS) and familial cold autoinflammatory syndrome (FCAS) are rare periodic fevers associated with CIAS1 mutations. A third entity, the chronic infantile neurological, cutaneous, articular (CINCA) syndrome was also ...