CAPS community

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

CAPS resources

Disease: All NOMID FCAS Muckle Wells

CAPS Frequently Asked Questions

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

If you are a patient or carer with a question about living with CAPS, about treatments, or other relevant information please email your question to question.caps@rarediseasecommunities.org and we will put it to the specialists who have agreed to answer your questions from time to time.

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What is FCAS?

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 a...

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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 dis...

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What is Muckle-Wells?

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...

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CAPS Patient Groups

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

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  • 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 providing information and support to patients and carers living with Muckle-Wells Syndrome and CINCA/NOMID.

    Contact AMWS/CINCA

  • Canadian CAPS Network

    About the Canadian CAPS Network Mission The mission of the Canadian CAPS Network (CCN) is to improve the lives of all those affected by Cryopyrin-Associated Periodic Syndromes (CAPS) and related disorders. Objectives •To improve awareness of CAPS and related disorders among the public, patients and family, clinicians, researchers, and policy makers. •To provide information and support to patients and families affected by CAPS and related disorders. •To encourage and support collaborative research into the causes and treatment of CAPS and related disorders toward improved diagnosis, treatment, and care. •To promote and support improved prevention, diagnosis, treatment and care for patients and families affected by CAPS and related disorders. •To provide a common voice for patients, families and supporters of CAPS and related disorders. •To serve as a forum for bringing together patients and families, healthcare professionals, researchers, industry, funders, and policy makers to raise funds and promote health policies that improve the lives of those affected by CAPS and related disorders.

    Contact Canadian CAPS Network

  • AIFP

    Associazione Italiana "Febbri Periodiche" Nel 2006 nasce l'AIFP, "Associazione Italiana Febbri Periodiche", che si prefigge di portare questo gruppo di malattie rare(le febbri periodiche o sindromi autoinfiammatorie), all'attenzione dei medici, attraverso la propria attività di sensibilizzazione. L'Associazione Italiana “Febbri Periodiche", è stata costituita nel 2006. Si prefigge di portare questo gruppo di malattie rare (le febbri periodiche o sindromi autoinfiammatorie), all'attenzione dei medici, attraverso la propria attività di sensibilizzazione. Tra gli scopi vi sono quelli di stabilire una rete di comunicazione e supporto tra i pazienti e le loro famiglie. Difendere i diritti civili, la dignità personale e di cittadino delle persone affette da Febbri Periodiche. Aiutare gli ammalati ad ottenere i servizi sociali di previdenza e di assistenza cui hanno diritto per legge. Curare il collegamento con le Associazioni straniere ed internazionali che hanno finalità analoghe e con tutte le Associazioni che si occupano di malattie che hanno sintomi o danni similari, per scambiare con esse informazioni utili relative alle attività svolte sia mediche che sociali ed adoperarsi per l'applicazione delle leggi esistenti e per la proposizione di nuove leggi più rispondenti alle esigenze dei malati affetti da queste patologie.

    Contact AIFP

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CAPS Documents

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

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CAPS Articles

Most recent articles:

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Research summary: Detection of Base Substitution-Type Somatic Mosaicism of the NLRP3 Gene with >99.9% Statistical Confidence by Massively Parallel Sequencing

Article summary:

Genetic testing for the heterozygous germline missense mutations in the NLRP3 coding region gene mutation that can cause Cryopyrin-Associated Perioidic Syndromes (CAPS) has bee...

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Research summary: Cryopyrin-Associated Periodic Syndrome: An Update on Diagnosis and Treatment Response

Summary:

This is an excellent article for anyone interested in learning more about Cryopyrin-Associated Periodic Syndromes (CAPS) and about the recommended diagnostic procedures. In addition, t...

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Muckle-Wells Syndrome

Symptoms

Common symptoms of MWS include recurrent rashes beginning in infancy or early childhood, intermittent fevers, joint pain (usually with no apparent changes in tissue and cartilage), rec...

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Familial Cold Autoinflammatory Syndrome

Symptoms

Patients with FCAS experience mild to debilitating symptoms such as rash, fatigue, recurrent fever and chills, recurrent joint pain, and recurrent conjunctivitis (inflammation of the o...

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Neonatal-onset Multisystem Inflammatory Disease

Symptoms

In addition to fever, symptoms of NOMID involve the skin, CNS and joints. Skin rashes occur in all patients within the first six weeks of life and persist throughout their lives. CNS s...

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CAPS Events

Most recent events:

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  • February 2012

  • VII International Conference on Rare Diseases and Orphan Drugs (ICORD 2012)

    From 4 to 6 February 2012

    A global meeting on international cooperation and public health policies focusing on research, diagnosis, development of and access to treatment, and care for rare diseases, will be held in Tokyo. The VII ICORD Conference will offer a platform for the exchange of perspectives for medical and healthcare professionals, patients and patients’ groups, basic and clinical researchers, policy-makers, government officers and pharmaceutical, biotechnology and medical device industries.

    More info

  • Rare Cancers Conference: Improving the Methodology of Clinical Research

    On 10 February 2012

    The European Society for Medical Oncology and Rare Cancers Europe have joined forces to present the first Conference addressing the scientific and educational needs of relevant stakeholder groups concerning challenges and potential solutions in the field of clinical research on rare cancers. The conference will take place in Brussels, Belgium.

    More info

  • National Health Policy Conference

    On 13 February 2012

    The National Health Policy Conference (NHPC) provides clarity on the nation's critical health policy issues for the upcoming year and delivers a program with insider perspectives from health policy leaders to an audience that includes researchers, policy experts, and advocates. This event is taking place in Washington, D.C.

    More info

  • 5th International Rare Disease Day 2012

    From 29 February to 1 March 2012

    February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries.On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”. Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! United States participants can find more information here: http://rarediseaseday.us/

    More info

  • 1st International Congress on Research of Rare and Orphan Diseases

    From 29 February to 2 March 2012

    Gebert Rüf Stiftung and BLACKSWAN Foundation, both active in supporting research activities in the field of rare diseases, are preparing the first “International Congress on Research of Rare and Orphan Diseases – RE(ACT)” in 2012. It will take place at the Gehry Building on the Novartis Campus, Basel/Switzerland from February 29th to March 2nd 2012. A superb setting for stimulating learning, exchange and networking. The “RE(ACT) Congress 2012” will bring together world leaders and young scientists from both university and industry to present cutting edge research, to discuss results and to exchange ideas.

    More info

CAPS community news

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    Cuts in Ireland drastically impacting young man with CINCA's future
    News, published 5 months ago

    show transcript


    Aisling McNiffe's voice crackles when she talks about her son's school prospects. Jack, a chirpy, fair-haired six-year old with a fondness for Toy Story movies, is the only person in the world known to have both Down's Syndrome and CINCA Syndrome, a degenerative disease that causes crippling headaches, severe arthritis, skin rashes, deafness and blindness.

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    Clinical Outcomes and Safety: A Registry Study of Ilaris (Canakinumab) Patients
    News, published 7 months ago

    show transcript


    The purpose of this observational study is to collect additional information regarding long-term safety and effectiveness of Ilaris in the treatment of CAPS patients in clinical practice.

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    Anakinra to Treat Patients With Neonatal Onset Multisystem Inflammatory Disease
    News, published 8 months ago

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    This study will evaluate the safety and effectiveness of anakinra (Kineret(Registered Trademark)) for treating patients with neonatal onset multisystem inflammatory disease (NOMID), also known as chronic infantile neurological, cutaneous and arthropathy (CINCA) syndrome.

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    From the Australian Prescriber: New drugs Canukinumab
    News, published 10 months ago

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    Canakinumab

    Some of the views expressed in the following notes on newly approved products should be regarded as tentative, as there may have been limited published data and little experience in Australia of their safety or efficacy. However, the Editorial Executive Committee believes that comments made in good faith at an early stage may still be of value. As a result of fuller experience, initial comments may need to be modified. The Committee is prepared to do this. Before new drugs are prescribed, the Committee believes it is important that full information is obtained either from the manufacturer's approved product information, a drug information centre or some other appropriate source.

    (Aust Prescr 2011;34:55-9)

    Ilaris (Novartis)
    vials containing 150 mg lyophilised powder for reconstitution
    Approved indication: cryopyrin-associated periodic syndromes
    Australian Medicines Handbook section 15.2.2

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    Más calidad de vida con biológicos en niños con patologías autoinflamatorias
    News, published 10 months ago

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    En el segundo gran grupo, el del síndrome de la fiebre persistente, no mantienen estos episodios tan marcados. Aquí se ubica el síndrome de CAPS o criopirinopatías. Las criopirinas son las proteínas que ponen en marcha el mecanismo inflamatorio.

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    “Studies of the Natural History, Pathogenesis, and Outcome of Autoinflammatory Diseases (NOMID/CAPS, DIRA, CRMO, Still's Disease, Behcet's Disease, and Other Undifferentiated Autoinflammatory Diseases)”
    News, published 11 months ago

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    Overall Status: Recruiting

    This study will examine and test patients with neonatal onset multi-system inflammatory disease (NOMID) to learn more about the cause and course of the disease. It will study the disease signs and symptoms and the possible role of a gene called CIAS1, and it will develop a database to gather information on patients with NOMID in the United States and around the world. It will also serve as a screening protocol to offer eligible patients participation in a treatment protocol, if an appropriate one is available.

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    NOMID in the news in Canada
    News, published 12 months ago

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    Such is the case for seven-year-old Brampton resident Michael Spiridakis, who suffers from neonatal onset multisystem inflammatory disease (NOMID), a genetic disorder that causes uncontrolled inflammation in multiple parts of the body.

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    Wood River teen pushes recognition of rare diseases
    News, published 12 months ago

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    Radney, 16, has a particular interest in the subject of rare diseases because almost four years ago she discovered she has Neonatal Onset Multisystem Inflammatory Disease, also called NOMID.....

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    Four cases of Muckle-Wells syndrome within the same family
    News, published 12 months ago

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    ABSTRACT

    Muckle-Wells syndrome is a rare autosomal dominant disease that belongs to a group of hereditary febrile syndromes. It is characterized by recurrent and self-limited episodes of fever, urticaria, arthralgia, myalgia and conjunctivitis since childhood, which are related to exposure to cold temperatures. Lately, progressive sensorineural hearing loss occurs. Amyloidosis is the main complication and can be found in about 25% of the cases. It has been demonstrated that there is an association with mutations in the NLRP3 gene, which codifies cryopyrin, a protein responsible for regulating the production of proinflammatory cytokines, such as interleukin-1Beta. The authors report four cases of the disease within a family.

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    La Respuesta al Canakinumab en el Tratamiento del CAPS dura 2 Añ
    News, published about 1 year ago

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    Article in SPANISH language:

    By: BRUCE JANCIN, Skin & Allergy News Digital Network

    GOTEBORG, SUECIA  - El bloqueo de la interleucina 1 (IL-1) con canakinumab aportó una remisión clínica rápida y constante a casi todos los niños y adultos con síndromes periódicos asociados a la criopirina (CAPS) que participaron en un extenso estudio de 2 años de duración.

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